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Sunday, March 27, 2011 12:17 AM CDT
This part of our journey has been difficult because I have had a hard time dealing with God’s answer of “no”. I think back to when I was a child, and how difficult it was sometimes when my parents said “no” to me. Even then, those answers seemed crushing and disappointing to me. I had a hard time dealing with that “no”. I look at my five year old Mason and see how he responds to me when I answer his questions with a “no”. It is often followed by denial, a tantrum, or tears. Many times he will say “Then, you don’t love me if you won’t let me do that. You’re not taking good care of me.” I laugh to myself when he says those words to me; but in reality, his thoughts are not so far off from mine with my Heavenly Father. I just shared last week how I felt unloved because of God’s chosen path with Connor.
So, where do we go when God says no? That’s where I stand today. Learning to move past this struggle is my defining moment, I believe. I guess the one thing that I have been focusing on lately is the fact that Jesus had to deal with God’s answer of “no” also. “My Father! If it is possible, let this cup of suffering be taken away from me. Yet I want your will to be done, not mine.” Matthew 26:39
Jesus prayed these words when his death on the cross was eminently near. Jesus was also asking to see if there was another way. We all ask God if you are powerful enough to do things differently, why don’t you? How can I accept your comfort and believe you want to heal my broken heart when you could have kept me from experiencing this sorrow in the first place? This is where we have inner conflict – what we want and believe is best seems to be at odds with God’s plans. Listening to Jesus’ struggle with this helps me to move through this conflict.
“While Jesus was here on earth, he offered prayers and pleadings, with a loud cry and tears, to the one who could rescue him from death. And God heard his prayers because of his deep reverence for God. Even though Jesus was God’s Son, he learned obedience from the things he suffered. In this way, God qualified him as a perfect High Priest, and he became the source of eternal salvation for all those who obey him. Hebrews 5:7-9
Well, I can certainly relate to the prayers and pleadings with loud cries and tears. When God answered “no” to me, I felt as if God did not hear my prayers. This verse assures me that He did. I’m certain that He heard His son’s prayers, yet He still answered no. It gives me comfort to be reassured that God is always listening to our heartfelt cries, even when He seems to be ignoring them.
Jesus’ reaction to God’s answer of “no” gives me an example to follow in my own life. Like Jesus, I’m trying to learn obedience through suffering. It helps me to know that Jesus wrestled with God’s plan for his life and death, even as he submitted to it, because I have wrestled with God’s plan for my life even as I have tried to submit to it. Jesus responded to God’s answer with “Not my will, but yours be done.” This is the attitude I’m praying for in myself. I’m standing on a precipice, looking out into my future. I’m holding my plans, my dreams, my pain, my doubt, my loss and my faith in my hands. The question is will I surrender all of these before my Heavenly Father? Right now, I’m doing it through gritted teeth, but I hope someday it will be with open, willing hands.
Tuesday, January 25, 2011 12:55 AM CST
When Connor was battling cancer, especially during his last six months, it would just kill me to see him suffer. I felt the suffering right along with him. My heart actually ached when I looked at his sweet face, and his body just wasting away before my eyes. I think that was really where I questioned God the most. How can you let this sweet child suffer like this? It was inhumane. I have often thought to myself that one of my first questions to Jesus when I see Him is “why such suffering?” And then, I wonder, when I see His face, if I will even care anymore. Or, will all those thoughts and pains just disappear at the sight of His face? I imagine it’s like forgetting the pains of childbirth once you hold your child in your arms. The song “It’s Gonna Be Worth It All” by Rita Springer is about this very thing… How our earthly troubles will be worth it when we see His face.
I don't understand Your ways
Oh but I will give You my song
Give You all of my praise
You hold on to all my pain
With it You are pulling me closer
And pulling me into Your ways
Now around every corner
And up every mountain
I'm not looking for crowns
Or the water from fountains
I'm desperate in seeking, frantic believing
That the sight of Your face
Is all that I need
I will say to You
It's gonna be worth it
It's gonna be worth it
It's gonna be worth it all
I believe this
I’m quoting II Corinthians 4:17 again. “For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.” I wish I could have been there when Connor saw Jesus for the first time. I’m sure that the pain and discomfort he had been feeling for several months were all forgotten at the sight of His face. I’m sure that Connor felt like it was all worth it … just to see His face!
In Revelation, John speaks of the coming tribulations and suffering of Christians for the sake of Jesus’ name. He encourages them all to be conquerors in all these trials, and they will receive a reward beyond their comprehension. The reward will be worth the cost.
“Do not fear what you are about you suffer. Behold, the devil is about to throw some of you into prison, that you may be tested, and you will have tribulation. Be faithful unto death, and I will give you the crown of life…. The one who conquers, I will grant him to sit with me on my throne.” Revelations 2:10 and 3: 21 I can just hear Connor whispering to me, “Mom, It’s gonna be worth it!!!”
Tuesday, December 28, 2010 10:31 PM CST
Christmas was wonderful, sharing time with family and friends. Our children had a great time, though Connor was truly missed. His big, enthusiastic, energetic personality had a way of lighting up a room, so we were reminded constantly of his absence. In spite of this, we joyfully celebrated Jesus birthday and were grateful for God’s cherished gift of our Saviour.
I realized this Christmas that I’m getting used to this new normal of no hospital trips, doctor visits, clinic visits, constant angst, chaos, fear and feelings of high adrenalin. Over the last three weeks, three of my friends have been diagnosed with 3 different cancer diagnoses. Now, I see my friends and their families scrambling and readjusting to their new normal. Knowing some of what lies ahead for them, my heart aches for them. I cry out to God to help them all through this. I wish there were some way to take all of this away for them. It’s unbelievable how one’s life can change in an instant. One morning, you’re healthy and the next morning, you are fighting for your life.
All of this has brought to the surface memories of Connor’s battle with cancer. There is so much suffering in this world. Some people would use this as an excuse to believe that a good God does not exist. We had a debate at our school a few weeks ago – an atheist versus a biblical scholar. Does a good God exist? The atheist has terminal cancer and he believes that his diagnosis is just more proof that there is not a good God. I wish I could have 5 minutes alone with him. His view is so skewed; it is so temporary. We all face death. Our bodies will one day give out, some sooner than others. So, I’m not sure why he’s mad at God for the cycle of life. Why would we stay angry at God for not providing us a temporary solution to our physical problems, when He has provided us an eternal solution for our spiritual lives?
I think we spend so much time looking at our lives through a physical perspective. Teilhard De Chardin said “We are not human beings having a spiritual experience, but spiritual beings having a human experience.” Our home here on earth is just an environment in which God is developing our spiritual life. My friend, Brent, who was diagnosed with cancer about 2 weeks ago, looks at his cancer differently than the atheist with cancer does. He shares with everyone that he is not afraid. God has given him a peace about this, and he knows where he’s headed. His life is not terminal; it’s eternal. What a different perspective.
This holiday season, my friends have weighed heavily on my heart. But their situation has brought with it a fresh gratitude to God for His salvation. It has made this Christmas season that much richer, that much more appreciated. The knowledge that Jesus birthday was just the beginning of God’s grace being poured out onto all our lives brings joy to my heart in the midst of all this. Because of this precious gift of salvation, I can still feel joy and peace, even when I miss my sweet Connor on Christmas morning. So, I say thank you God for Christmas and what it means to me! And, hopefully, what it means to you!
“Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.
II Corinthians 4:16-18
Always believing,
Joy Cruse
Sunday, December 12, 2010 3:46 PM CST
So many questions arise as I wrestle with God. Suffering causes us
all to look deeper at our own beliefs about God and what the Bible
says. I've always loved the verse "And we know that in all things God
works for the good of those who love him, who have been called
according to His purpose" - Romans 8:28. This verse has always given
me comfort, knowing that God was going to work good in my life from
all things, even my suffering. Since Connor's death, I've struggled
with this verse. I find myself doubting all the hope I've placed in it.
Don't get me wrong. I know that there have been many "good" things
that have come from Connor's brief and courageous life. I still
receive e-mails and letters from people telling me how he has impacted
them. I know that he is a great example to us all of bravery, faith, and joy in the midst of sorrow. He is my hero. He has definitely done a great work for God's Kingdom.
I have to be honest here. When I read this verse for the first 39 years of my life, the words "God would work good in all things" focused on a more personal level for me. Meaning, I understood it to be that God was working out everything to be good FOR ME! Blessings
were in store for ME! If I love the Lord and am called according to His purpose, Blessings are certainly ahead. Surely, he will answer my prayers and fix my problems. It's really the focus of the "name it and claim it" philosophy of some churches today. At a closer examination of this verse, I understand that this "good" that is being worked out, is for God's Glory. This "good" will be for His Kingdom, and that doesn't always line up with my own expectations and wishes.
For some, this knowledge may not be so difficult to swallow. But, for those of us who have been disappointed by God's choices for our lives, it can be very disheartening. It leaves me sometimes feeling like my wishes and desires aren't so important. I have always wanted to
further God's Kingdom and glorify Him in all my actions, but I never expected that to come with such a high cost - MY SON.
I've also loved the bible verse that said "He will give you the desires of your heart." Doesn't that sound marvelous? Well, it doesn't seem to be true, because I did not get the desire of my heart. Connor is no longer here with me. What about that family of four children that I always wanted? It still hurts to have a child missing in the back seat of my car and around our dinner table. Last week, I looked up the whole verse. It's Psalm 37:4. "Delight yourself in the Lord and He will give you the desires of your heart." AAAhhh. Now, the meaning is
clearer. If God is the desire of our heart, then yes, God will give us more of Him. That's what He meant by the desires of our heart. He wants us to draw nearer to Him. He wants our desire to be just Him.
So, now, I'm faced with this knowledge that it's not all about me. Wow! Shocker. As I look at the life of Paul, he is a great example of putting his earthly, selfish desires aside and only wanting God's purposes to be lived out through his life. Christ was the source of Paul's continual joy, for Paul's life found meaning in Christ. I admit that I'm not always there. I do know that every day, I constantly have to bend my knee to His Will and lay my selfish desires
at His feet. This is the battle that wars within me. I suspect that others have fought in this same battle. My prayer (like Paul's prayer) for us all is that "whatever was to my profit, I now consider loss for the sake of Christ. What is more, I consider everything a loss compared to the surpassing greatness of knowing Christ Jesus my Lord, for whose sake I have lost all things. I consider them rubbish, that I may gain Christ and be found in Him!"
Always believing,
Joy Cruse
Tuesday, November 2, 2010 5:04 PM CDT
Suffering teaches us that God’s ways are above our ways. We often struggle like Job did with the injustice and the mystery of our sufferings. We search for a reason why this should happen? I know that there were times when I questioned God’s plan. There surely is a better way. Job questioned God’s Sovereignty, too.
“Even today, my complaint is bitter; his hand is heavy in spite of my groaning.
If only I knew where to find him; if only I could go to his dwelling!
I would state my case before him and fill my mouth with arguments.
I would find out what he would answer me, and consider what he would say.
My feet have closely followed his steps; I have kept to his way without turning aside.
I have not departed from the commands of his lips; I have treasured the words of his mouth more than my daily bread.
But he stands alone, and who can oppose him? He does whatever he pleases.”
Job 23: 2-5, 11-13
I understand Job’s frustration. Like Job, we often feel that if we live a life that follows after Christ, we are justified in getting the right reward for our efforts. It makes no sense that others seem to be rewarded for unrighteous behavior, while righteous men like Job don’t get their prayers answered. It seems so unfair. Often, I would cry out to God in my frustration. “Did I not glorify you in my trials? Did I not exhibit faith in you at all times?” Doesn’t it make sense that I should be rewarded for my efforts? While I see other families who are battling childhood cancer that make no mention of God, His strength or saving grace, continue to hold their surviving children in their arms. It makes no sense and doesn’t seem fair. Have you ever experienced these same emotions?
God’s response to Job hits home with me.
“Who is this that darkens counsel by words without knowledge?
Now gird up your loins like a man and I will ask you, and you instruct Me!
Where were you when I laid the earth’s foundation? Tell me, if you understand.
Who marked off it dimensions? Surely you know!
Who stretched a measuring line across it?
On what were it’s footings set, or who laid its cornerstone-
While the morning stars sang together and all the angels shouted for joy?”
God’s response reminds me of a parent’s response to a child. “Because I said so.” “Because I know best.” “I brought you into this world and I can take you out.” –Bill Cosby. I can see that God doesn’t have to defend his actions to me. He’s the one and only true God, who put this world into motion. He’s my creator and my Lord. I owe Him my total allegiance and Love, not my questions and accusations.
These words from Addison Road give us a glimpse of God’s awesomeness and His Holiness.
I guess I thought that I had figured You out
I knew all the stories and I learned to talk about
How You were mighty to save
Those were only empty words on a page
Then I caught a glimpse of who You might be
The slightest hint of You brought me down to my knees
(CHORUS)
What do I know of You
Who spoke me into motion?
Where have I even stood
But the shore along Your ocean?
Are You fire? Are You fury?
Are You sacred? Are You beautiful?
What do I know? What do I know of Holy?
(CHORUS 2)
What do I know of Holy?
What do I know of wounds that will heal my shame?
And a God who gave life "its" name?
What do I know of Holy?
Of the One who the angels praise?
All creation knows Your name
On earth and heaven above
What do I know of this love?
Always believing,
Joy
Sunday, October 10, 2010 3:20 PM CDT
Suffering, the great teacher, has also taught me to try to look at the situation through a heavenly perspective. It’s only normal that we should look at everything through earthly eyes, but there is so much more to be seen. We often do not recognize God’s bigger picture or plan. As we were studying Mark 8 :31- 33 in Sunday School, this became so apparent.
“Jesus began to teach the disciples that the Son of Man must suffer many things and be rejected by the elders, chief priests and teachers of the law, and that he must be killed and after three days rise again. He spoke plainly about this and Peter took him aside and began to rebuke him. But when Jesus turned and looked at his disciples, he rebuked Peter. ‘Get behind me, Satan! You do not have in mind the things of God, but the things of men.’”
Pretty strong words. I was trying to think of the words that Peter may have said to Jesus, like…This is your great plan? You came to earth to die? Why don’t you just take over your rightful authority on the throne? You are the King of Kings, so use your power to rule here on earth. There has got to be a better way. Why does there have to be a cross?
I have to admit that I’ve asked some of those questions to God myself. I sensed the same frustration in Peter that I have felt. This was your great plan for Connor? There’s not a better way? Wouldn’t Connor serve you better if he had lived? I’ve offered many different scenarios that seem a lot better than this one. But, I can just hear God answer me, “You do not have in mind the things of God, but the things of men.”
We often think that Victory has to be won through strength instead of weakness, military might rather than selfless surrender, self promotion instead of sacrificial submission and humility. I’m sure that was how Peter saw it, but I’m sure his perspective changed when he and John arrived at the empty tomb. I wonder if that was the AH HAH moment for Peter. Or was it when Jesus appeared to the disciples that same night?
When I think of Connor, I wonder if I will have that same clarity this side of Heaven like Peter did, or will the clarity come once I’ve entered the gates of Heaven. I pray that whether answers come this side of Heaven or not, I will continue to cling to my faith and hope in Jesus Christ. Like Jesus said in John 21:29, “Because you have seen me, you have believed; blessed are those who have not seen and yet have believed.” I pray that I will focus on the things of God and not the things of man.
“Since Jesus went through everything you’re going through and more, learn to think like him. Think of your sufferings as a weaning from that old sinful habit of always expecting to get your own way. Then you’ll be able to live out your days free to pursue what God wants instead of being tyrannized by what you want.”
I Peter 4:1-2 The Message
Always believing,
Joy Cruse
Wednesday, August 25, 2010 4:52 PM CDT
Suffering has also created in me a special yearning for my Heavenly Home. I think we all have a sense of Heaven, but suffering brings Heaven to the forefront of our hearts and minds.
Even Connor had a special yearning for his Real home. In the spring of ’08, Connor informed me that he wanted to go home (as we’re sitting in our family room). I said, “We are home, silly”. He said, “no, my real home. God is my Heavenly Father, so Heaven is my real home.” I said, “You’re right, but are you really ready to go home now?” He smiled and answered, “not yet, Mommy. I’m not ready yet.” At the time, I wondered if that was some kind of foreshadowing. I was praying that it wasn’t some kind of warning or preparation that God was using to get me ready for Connor’s home-going. As I see it now, God was preparing Connor’s heart for his eternal home.
Tait and I often said that Connor always knew that he was just passing through this place on his way HOME. He never slept in his own room. He slept with MacKenzie when he was really young and then Carson when he got older. He gave his money to Carson to put in his piggy bank, so they could share their money. He never collected baseball cards or special items. He would always give them away. Connor and Carson shared their clothes and closet. I think the closer he got to his Home-going, the more he yearned for it and had a true sense of it.
Carrie Underwood has a new song out, called “My Temporary Home”. From her lyrics, I can tell that she gets it, too.
Little boy, 6 years old
A little too used to bein' alone
Another new mom and dad, another school
Another house that'll never be home
When people ask him how he likes this place
He looks up and says with a smile upon his face
"This is my temporary home
It's not where I belong
Windows and rooms that I'm passin' through
This is just a stop, on the way to where I'm going
I'm not afraid because I know this is my
Temporary Home."
Young mom on her own
She needs a little help got nowhere to go
She's lookin' for a job, lookin' for a way out
Because a half-way house will never be a home
At night she whispers to her baby girl
Someday we'll find a place here in this world
Old man, hospital bed
The room is filled with people he loves
And he whispers don't cry for me
I'll see you all someday
He looks up and says "I can see God's face"
"This is my temporary Home
It's not where I belong
Windows and rooms that I'm passin' through
This was just a stop, on the way To where I'm going
I'm not afraid because I know this was
My temporary home."
This is our temporary home. Thank you, Lord, for making it possible for us to have a permanent Home with you in Heaven.
Always believing,
Joy Cruse
Thursday, August 12, 2010 7:16 AM CDT
As I get older, I have become more and more aware of the fact that SUFFERING is such a major part of the world, of this fallen world. I know that may seem to be a funny statement, but I think that as a child we are always of the mind set that everything is rosy and life is full of fairy-tale endings. But now, I see that life is also filled with life stories that don’t match up with these fairy tales that I so often imagined as a child. It doesn’t match up when a one year old, Walker Rainey, passed away from cancer yesterday. Or when my friend’s husband left her and her children last year. So many of my friends have lost their jobs, too, and are struggling to support their family. The list goes on. At one time, these everyday trials surprised me, as if they were not a normal part of life. Now, I’m no longer surprised. Just as Peter said…
“Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when His glory is revealed.”
I Peter 4:12-13
So, now I’m trying to understand what good can come from suffering. How can God’s glory be revealed? Dr. David McKinley, our friend who is a pastor in Augusta, Georgia, has this perspective on suffering.
“Suffering forces us to turn from shallow distractions and smaller irritations to consider the ultimate issues in life. It helps us get our eyes on something that really matters. Too much of our time is spent worrying about things that don’t’ matter.
Suffering is the great purifier of the pettiness that often consumes us in life. One of the reasons some of us never develop into PEOPLE OF GREAT CHARACTER is because we constantly give our attention to the petty things of life. Commentator George Will says ‘pettiness is the tendency of people without large purposes.’ If you live with a larger sense of purpose, than you’re not going to let your life be burned up by all the little things that really don’t matter. This is the spiritual gift of pettiness and pouting. If we ever lose sight of what we are about for eternity - in preaching the gospel, in seeing people redeemed, and helping people who suffer to have a hope and a heaven that is yet to come - then we miss everything that really matters in life and we focus on all the wrong things.
That’s why Peter says here, “you are tested in the genuineness of your faith, so that it is more precious than gold.”
Your life needs to count for more than just the petty trivialities that so often consume us. So suffering in life matters.”
I saw this very principle worked out in our lives. When Connor was first diagnosed, our lives were immediately simplified. No longer did we worry about the small things. It was like our mind/energy and focus were all wiped clean and we only had what was important set before us. So, I agree with Pastor McKinley that suffering is the great purifier. I pray that we can all wipe away all those petty trivialities and focus on what really matters in life – what we are doing for God’s Kingdom.
Please pray for two families who have lost their children to cancer recently – Walker Rainey’s family and Carlin Ascher’s family. Thank you.
Always believing,
Joy Cruse
Friday, July 23, 2010 8:54 AM CDT
First of all, thank you to everyone who prayed for us and sent us encouragement through cards, emails, calls, etc. Making it through the first anniversary was less overwhelming and painful than expected. I know that was due to your love and support. Your support reminds me of birds flying in the V formation. This aerodynamic V shape formation reduces the air drag (resistance) that each bird experiences when in flight in comparison to a bird flying solo. This allows them to cover longer distance (thousands of miles) with much less effort. I feel like all of you were taking the lead, helping our family get through a very difficult time with much less effort/hardship. WE appreciate you all.
As the year has progressed, I admit my mind has had doubts and regrets. I know that it is the normal progression of grief to second guess our actions, our attempts at saving our loved one. My mind reels with the possibilities. “What if” becomes a daunting, taunting mantra in my head. “What if Connor had never had radiation? What if we had gone to another hospital for treatment? What if we had found the second cancer sooner?” The list of questions goes on and on, leaving me little peace. I know that we fought hard and long for Connor. I do not regret any of our actions in that way, but I worry that I may have misread God’s guidance or taken a wrong turn.
As I was sitting in church the other day, our pastor read from Psalm 139.
1 O LORD, you have searched me
and YOU KNOW ME.
2 You know when I sit and when I rise;
you perceive my thoughts from afar.
3 You discern my going out and my lying down;
you are familiar with all my ways.
4 Before a word is on my tongue
you know it completely, O LORD.
5 YOU HEM ME IN – BEHIND AND BEFORE;
YOU HAVE LAID YOUR HAND UPON ME.
6 Such knowledge is too wonderful for me,
too lofty for me to attain.
7 Where can I go from your Spirit?
Where can I flee from your presence?
8 If I go up to the heavens, you are there;
if I make my bed in the depths, [a] you are there.
9 If I rise on the wings of the dawn,
if I settle on the far side of the sea,
10 EVEN THERE YOUR HAND WILL GUIDE ME,
YOUR RIGHT HAND WILL HOLD ME FAST.
13 For you created my inmost being;
you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
16 your eyes saw my unformed body.
ALL THE DAYS ORDAINED FOR ME
WERE WRITTEN IN YOUR BOOK
BEFORE ONE OF THEM CAME TO BE.
Listening to this, I was reminded of God’s protective Hand on our lives. No matter what mistakes we made, God had Connor’s life planned for him years before he was even created, before the beginning of time. My efforts to control the situation is just my feeble attempt to change the course of God’s plan (change it to my liking). I’ve read this passage for years and I know the significance of it, but hearing that Sunday was just what I needed to release myself of guilt. It’s not what I did or didn’t do that determined Connor’s fate. The relief I felt was freeing.
I’m sure that all of us have felt the heaviness of responsibility for our loved one’s welfare before. The weight of our decisions seems so staggering. Just remember that God’s got this. He knows the direction you will take. He knows every consequence and ripple effect. “All the days ordained for you were written in His book before one of them came to be.” Let that verse relieve you of any stress or guilt that you may have.
Always believing,
Joy
Friday, July 9, 2010 3:47 PM CDT
"Before The Morning"
Lyrics By Josh Wilson
"Do you wonder why you have to
Feel the things that hurt you
If there's a God who loves you where is He now
Maybe there are things you can't see
And all those things are happening
To bring a better ending
Someday somehow you'll see you'll see
Would you dare would you dare to believe
That you still have a reason to sing
'Cuz the pain that you've been feeling
It can't compare to the joy that's coming
So hold on you gotta wait for the light
Press on and just fight the good fight
Cause the pain that you've been feeling
It's just the dark before the morning
My friend you know how this all ends
You know where you're going
You just don't know how you'll get there
So say a prayer
And hold on cause there's good for those who love God
But life is not a snapshot
It might take a little time but you'll see the bigger picture
ONCE YOU FEEL THE WEIGHT OF GLORY
ALL YOUR PAIN WILL FADE TO MEMORY
It's just the hurt before the healing
Oh the pain that you've been feeling
It's just the dark before the morning"
I've been trying to sum up how I feel about Connor's first Anniversary of his welcome to heaven. I've been listening to this song for months now and it expresses both the pain I feel and the hope I have in Christ. As July 10th approaches, Tait and I have been remembering the days that led up to Connor's passing. These memories mainly consist of Connor's pain and suffering. It's like reliving it all over again. But then, it was like Connor spoke to me and said "Mom, I'm not like that anymore. I am not suffering or in pain. Don't put yourself through that misery anymore. You're going through unnecessary pain, because those days are over for me. Why put yourself through that?"
So, I'm taking Connor's advice. I'm focusing on the morning or the dawn. I'm focusing on God's promises to restore joy to our lives. "The sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us" (Romans 8:18.). Our pain and struggles are very real, but they are only the dark before the morning.
It's like what Pastor Graham said at Connor's service. "Don't trade what you do know for what you don't know." I don't know why this had to happen to Connor. Why did he have to get two cancers by the age of 8? Why did he have to die? I may never know those answers this side of Heaven, but I do know a lot of things about God. He loves us, He will never leave us, He died for us and He prepared a place for us in Heaven for those who love Him. I will choose to focus on what I do know and the dawn. Someday, I will see Connor again and God's glory will be revealed to me. That is the promise I'm counting on. Until that day, I will fight the good fight until I see His face, like Connor would have wanted me to.
"I will turn their mourning into gladness; I will give them comfort and joy instead of sorrow.
Restrain your voice from weeping and your eyes from tears, for your work will be rewarded. So there is hope for your future, declares the Lord."
Jeremiah 31:13 &16
Thanks to all of you for your words of encouragement through phone calls, cards, e-mails and facebook entries. We appreciate your prayers and support more than you can know.
Always believing,
Joy Cruse
Tuesday, June 22, 2010 11:07 PM CDT
I’ve been having a hard time sitting down at the computer to write this next entry. I’ve been trying for a week now. I’m trying so hard to write something uplifting and inspirational, but I just come up empty. My mind is so saturated with memories of Connor’s last few weeks. A year ago tomorrow, we flew home from Guatemala for the last time. Painful memories. From May until July 10, every day leads me back to where we were a year ago. I guess it’s just going to be this way for awhile. Instead of lingering on my difficult times, I thought I would leave you with a new song by Matthew West. It’s called “Save a Place for Me.” It says exactly what I feel.
Don't be mad if I cry
It just hurts so bad sometimes
'Cause everyday it's sinking in
And I have to say goodbye all over again
You know I bet it feels good to have the weight of this world off your shoulders now
I'm dreaming of the day when I'm finally there with you
Save a place for me
Save a place for me
I'll be there soon
I'll be there soon
Save a place for me
Save some grace for me
I'll be there soon
I'll be there soon
I have asked the question why
But I guess the answer's for another time
So instead I'll pray with every tear
And be thankful for the time I had you here
And I wanna live my life just like you did
Make the most of my time just like you did
And I wanna make my home up in the sky
Just like you did
Oh, but until I get there
Until I get there
Save a place for me!
On a different note, thanks to all our TeamConnor friends and supporters who made our CT Relay Run and our III Forks Golf tournament and Dinner a success. You guys are the BEST!
Always believing,
Joy
Thursday, June 3, 2010 8:32 AM CDT
As most of you know, when the surgeon removed the tumor in Connor’s stomach in January of ’09, he placed a feeding tube there, because his stomach was half the size that it used to be. This feeding tube and his smaller stomach were always a source of frustration for Connor. As most 8 year old boys love to eat, so did Connor. After the surgery, he would get full too quickly. His eyes were definitely bigger than his stomach at this point. Many of his meals were followed by a stomach ache and a little vomiting, because he ate too much.
He said to me a couple times that he couldn’t wait until God healed him, so he could eat and drink like he used to. He remembered a time in Kindergarten when he and his friends would guzzle a whole bottle of water. He said that he couldn’t wait to drink like that again.
Ironically, when his feeding tube fell out on July 4th, everything he ate and drank ran right through him into a colostomy bag. He would drink liquid or eat something and one second later, we would see it filter into the colostomy bag. He ate and drank constantly. His appetite and thirst were never satisfied. He was certainly “guzzling” now. He would even drink throughout the night, finishing off several cups of water, juice, soda, and Gatorade. It didn’t make for very good sleeping conditions. We had a pantry full of drinks that Connor had requested. For months, I could still see evidence of all his drinks in my pantry. He would make me drive him to 7-Eleven or the grocery store and we would go through each aisle until he had chosen his drinks for the next 24 hours. He was almost obsessed with having enough drinks on hand.
When I think of Connor this way, I can’t help but think of the verse, John 6:35. “Then Jesus declared, "I am the bread of life. He who comes to me will never go hungry, and he who believes in me will never be thirsty.”
Connor’s physical state was hungry and thirsty all the time, and he was never fully satisfied. He was always searching for physical fulfillment. His condition reminds me of us all. How many times do we seek after something that will fulfill us, only to be left feeling empty? Do we search for a mate, hoping that will fulfill us? What about the almighty dollar? Or seeking to satisfy all our desires? Does that quench our thirst? What about recognition and fame? Happiness?
I was watching Cheryl Crow on “Extreme Home Makeover”. She said that all of us are moving towards a place of happiness; isn’t that what we ultimately strive for in life? I couldn’t help but think how she is chasing after the wrong dream. She will never find the happiness she seeks without out a personal relationship with God. She will continue to thirst and hunger until God fills that need in her life. He is the only One who can complete us. Sorry, Tom Cruise. It’s not Renee Zellweger.
Although Connor was like this for a time, I am glad to know that Connor is now completely and fully satisfied, never to thirst or hunger again. God’s promise offers such a comforting future for Connor and all of us. I know that Connor is now feasting at the Mighty Banquet Hall in Heaven. And I know that here on earth, God can provide for all of us, and all our spiritual needs as well. We just need to tap into this unlimited source of life.
“They are before the throne of God; and they serve Him day and night in His temple; and He who sits on the throne spreads His tabernacle over them. They hunger no longer, nor thirst anymore; nor does the sun beat down on them, nor any heat; for the Lamb in the center of the throne is the Shepherd, and guides them to springs of the water of life; and God wipes every tear from their eyes.” Revelations 7:15-17
Always believing,
Joy Cruse
Tuesday, May 18, 2010 1:19 PM CDT
Saturday, May 15, 2010 was the 5 year Anniversary of Connor’s original diagnosis of Stage IV Neuroblastoma. It was the beginning of our metamorphosis, the changing of all our lives forever. I can’t say that I feel like a beautiful butterfly now, but I definitely feel like I have gone through the painful transformation.
This roaring train that began 5 years ago still has its effect on Tait, my children and myself. I thought that when Connor’s struggles ended on earth, that the effects of this war would somehow ease on my family. Not so. I see how Mason has anger issues. Wouldn’t you be angry, if you were born into this life of cancer chaos? Carson deals with being “bored” every day since Connor’s been gone. That’s what he told Tait. I believe he’s starting to accept this new life without Connor and trying to embrace new friendships and these new circumstances. Kenzie is mature beyond her years. She’s had to grow up and be so independent, because Tait and I were not there for her emotionally and physically. Tait and I struggle to help ease our children’s pain.
I thought days of watching my children suffer were over. Wrong again. It’s just a different kind of suffering. Not physical like Connors, but still suffering. I’ve had many conversations with God. “Enough, already! We’ve gone through four years of pain. Why, more pain? Isn’t our punch card full yet? What is your plan in all this?” I thought that at this 5 year mark, I would be shouting praises to God. I could tell all the doctors who doubted my God and Connor’s healing, that my God is powerful, awesome and a miraculous God. It wasn’t supposed to be this way. “Couldn’t God’s plan be served better if Connor were healed on earth? Isn’t that a better plan, God?” I start doubting his Sovereignty; his willingness to heal in this day and time.
As soon as these cries of doubt leave my mouth, I feel guilty. Should I really say these things to God? Is it disrespectful? Then, I think of my daughter, MacKenzie. If she had a problem, or especially a problem with me, I would want her to come straight to me, not to anyone else. Bring her cares and worries to me, so I can help her. How much more does our Loving Father in Heaven feel about our worries? “Cast all your cares on Him, because He cares for you.” I Peter 5:7
The prophets, Job and King David give us many examples in the old testament of crying out to God, throwing our doubts, complaints and worries His way. Job said, “Though I cry, ‘I’ve been wronged!’ I get no response; though I call for help, there is no justice. He has blocked my way so I cannot pass; he has shrouded my paths in darkness. He has stripped me of my honor and removed the crown from my head. He tears me down on every side till I am gone; he uproots my hope like a tree. His anger burns against me; he counts me among his enemies. His troops advance in force; they build a siege ramp against me and encamp around my tent.” These honest complaints from Job (some I can relate to) give me confidence to share my innermost worries, without fear or restraint.
I love this new song by Amy Grant, “Better than a Hallelujah”. I think she gets it, too. God wants to hear EVERYTHING, good and bad. He wants all of our hearts, not just the good and pretty pieces, but also the hurting, ugly and angry pieces.
God loves a lullaby
In a mothers tears in the dead of night
Better than a Hallelujah sometimes.
God loves the drunkards cry,
The soldiers plea not to let him die
Better than a Hallelujah sometimes.
The woman holding on for life,
The dying man giving up the fight
Are better than a Hallelujah sometimes
The tears of shame for what's been done,
The silence when the words won't come
Are better than a Hallelujah sometimes.
We pour out our miseries
God just hears a melody
Beautiful the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah.
Always believing,
Joy Cruse
Thursday, April 29, 2010 11:11 PM CDT
In my last blog I mentioned how frustrating it was to deal with God’s silence. I’ve learned that Silence isn’t always a bad thing. Sometimes I just can’t handle the truth of what is to come and it is better to have God’s silence.
That is why I love Habakkuk. He was a prophet in the Old Testament. Habakkuk prayed that God would discipline his children, the Israelites, for their sinful behavior. At first, he was frustrated because God wasn’t answering his prayers. The Israelites continued to sin, without any repercussions. There was Silence even for Habakkuk. Then, God finally answered him. God warned him of the destruction/exile coming to his people in Israel. He prophesied to them their coming annihilation by their enemy, the Babylonians. At first, Habakkuk was in shock. How could God let the Babylonians destroy the Israelites when they were 100 times more sinful than the Israelites were. Surely, God could think of a better plan than that!!! Eventually, Habakkuk accepted God’s word on their fate. In spite of the impending doom that was close at hand, Habakkuk spoke these words in Chapter 3:16-19.
16 I heard and my heart pounded,
my lips quivered at the sound;
decay crept into my bones,
and my legs trembled.
Yet I will wait patiently for the day of calamity
to come on the nation invading us.
17 Though the fig tree does not bud
and there are no grapes on the vines,
though the olive crop fails
and the fields produce no food,
though there are no sheep in the pen
and no cattle in the stalls,
18 yet I will rejoice in the LORD,
I will be joyful in God my Savior.
19 The Sovereign LORD is my strength;
he makes my feet like the feet of a deer,
he enables me to go on the heights.
I’m amazed that Habakkuk could write these words in the face of their horrible fate. He’s my new Old Testament hero. I cannot say with confidence that I could have written those words knowing Connor’s fate. I guess my God knew that, so He spared me that knowledge beforehand. I pray that we can all say these words from Habakkuk when we are faced with trials, when God is silent and when we are not rescued from the painful journey that we must travel….. “yet, I will rejoice in the Lord.”
Always believing,
Joy
Tuesday, April 13, 2010 5:53 PM CDT
Last time, I spoke about unanswered prayers or not getting the answers we prayed for. Sometimes, we experienced something else with our prayers. SILENCE. At times, it was though there was a brick wall where God’s answers were being blocked. I would cry out in frustration, “Why can’t I hear you?” Or when I did hear from him, I felt as though I was misunderstanding his answers to me. It was as if my radar was faulty. I either didn’t hear anything or it wasn’t coming in clear. I would read His Word and interpret it one way, only to find out later, that is not what those Words or promises meant to me. What do we do when God is silent or unclear?
I will say that even when He was silent, I felt His presence. I never felt alone, but what could be the point of His silence? Surely, there is a purpose in ALL that He does. Finally, 9 months after Connor’s death, maybe I have some understanding behind God’s purpose in all this.
We were discussing this in Bible Study and my friend, Marcy, made an interesting observation. If the Lord had not remained silent or unclear to my questions about Connor’s fate, how would I have responded? Would I have acted in such faith if I knew Connor would not live past the age of 8 ˝? Would I have fought so diligently for him if I knew my efforts would have been in vain? Could I have lived with no regrets without that valiant fight for my son’s life? Would I have carried Hope in my heart if I knew Connor’s final date on earth? Could I have remained strong? Honestly, I don’t know the answers to those questions.
I do know that things would have been different, though, if I had the knowledge of Connor’s fate ahead of time. What would God have said to me if He had not remained silent? Would those answers have been a benefit for me or my downfall? In hindsight, I am grateful for His silence. Like Garth Brook’s song the dance, I would not have wanted to know when the dance would end. I see God’s wisdom now in his silence, though His silence at the time was heart-wrenching and maddening. Again, His Sovereignty is a blessing.
“Can anybody hear me?
The silence is deafening
Why do You feel so far away?
When I know You’re here with me
But I just need faith to see
Nothing can separate me from Your love
I will trust in You, even in the moments
I can’t find you, and I will hold on to
Your promises of love
You’ve never failed before” By: Meredith Andrews
Always believing,
Joy Cruse
Tuesday, March 30, 2010 5:01 PM CDT
I mentioned on my last blog how my prayer life has been under construction. During Connor’s illness, I was always searching for bible verses and Christian books on a powerful prayer life. I was constantly in prayer for Connor and others. I was praying specifically. I was praying with Faith and Belief. I was praying with a group of united believers (when 2 or more are gathered in his name). I was approaching God with a repentant heart, always asking Him to search my heart for anything that would hinder my prayers. I didn’t want to be lacking for anything in my prayer life. I didn’t want to search my heart and my prayer life and find that I was hindering Connor in any way. I found myself following the instructions of all the best books on prayer. I was thorough, trying to find the right “recipe” for answered prayers.
At the end of Connor’s battle with cancer, I found myself dazed and confused. Nothing about “powerful prayers” made sense anymore. The advice from all those “experts” didn’t seem to measure up, didn’t seem to work. Even following the Bible’s advice on prayer didn’t seem to help my case any. Praying with belief, praying in large numbers, praying specifically, praying in the right order, etc. didn’t add any specific “power” to my prayers. I eventually realized that the quality and quantity of prayers do not change the course of God’s plans for all of us. His plans will not be thwarted. His plans are much bigger than my personal desires.
So, here I am searching for the true, right meaning of my prayers…how God means for me to pray. I’ve come to the conclusion that our prayers are another example of complete faith and leaning on God’s sovereignty without complete understanding. Complete surrender. It is not a wish list. There is not a recipe. It’s our willingness to line up our will to His. Our opportunity to commune with Him. Our grateful response to His blessings and His character. Our heart’s cry of pain and agony that resonates with His heart. Our choice to be obedient to His command to “Be still and know Him.” Our chance to bask in His Presence, to feel His joy and His peace.
I find that all these lessons continue to bring me back to the same principle….complete surrender in all areas of my life. I find that my prayers look different now. I continue to “cast my cares upon Him, because He cares for me” (I Peter 5:7). I also pray for His will, for God’s Grace to get through whatever comes our/your way, for God to redeem the situation and for me/us to know Him more. I don’t know if this would be the best foundation for a book on powerful prayer. I think the experts may not agree fully with me. I just know that that’s where I am right now - trying to sort through the ashes of my disappointed dreams and my unanswered prayers.
I like Sarah Young’s perspective on the matter.
“Do not seek me primarily for what I can give you. Remember that I, the Giver, am infinitely greater than any gift I might impart to you. I am calling you to a life of constant communion with Me. Remember your ultimate goal is not to control or fix everything around you; it is to keep communing with Me. A successful day is one in which you have stayed in touch with Me, even if many things remain undone at the end of the day.”
Thursday, March 11, 2010 7:58 PM CST
I’ve recently begun to play tennis. It’s a wonderful, fun sport, but it is also frustrating at times for a new player. A few months ago, I had one of those frustrating moments. I had just come from Bible Study where we were discussing prayer. I have to admit that my prayer life is going through some reconstruction right now. In Bible Study, I confessed that I felt that prayers don’t “move mountains”. Feelings of frustrations were already bubbling at the surface when I stepped on the tennis court. It was like a scab had been pulled off.
At this point, we were playing a game where you play until you miss. Then you step off the court and go to the end of the line. Wait a few minutes until it is your turn again. I continuously found my self at the back of the line, each time vowing to myself that I would make corrections and try harder next time. Then, I would miss again and the instructor would yell “next”. I felt a little bit like I was in a Seinfeld episode with the Soup Nazi. I wanted to keep playing, but the instructor wouldn’t let me. I wanted to make corrections, to try again, to finish the game. But, I was not allowed. My frustrations were rising, and honestly I wanted to cry and throw a Mason (my four-year-old) size fit! I wanted to stomp my feet and walk out!
I couldn’t understand why I was so upset. Why couldn’t I get a hold of my emotions? After the lesson was over, I got in my car and then the tears started flowing. It hit me suddenly why this had been so hard for me. It all reminded me of the frustrations I felt during the last six months of Connor’s life. All those feelings I had repressed, had come to the surface and were flowing over like hot lava (as Carson likes to say). This feeling of being POWERLESS was overwhelming. Why didn’t our prayers “work”? Why didn’t our hard work pay off for Connor? I’ve always believed if you worked hard enough for something, you can achieve it, right? I’m still here, willing to sacrifice for Connor. I’m still wanting to “play the game”? I’m not giving up. Why was the choice taken from me? Don’t I have a say in this? POWERLESS to change the course/direction of Connor’s outcome.
Have any of you felt these same feelings of being POWERLESS? Did your boss walk into your office and tell you that you’re fired? No warning. No choice in the matter. Maybe, your spouse informed you that he/she is leaving because they don’t love you anymore. You don’t get a say in this? You must live with these consequences. The doctor tells you that you have cancer. Are you kidding me? I’m healthy. I eat right and exercise. I should have some control over my health. POWERLESS.
Many times during the course of our life, we will feel POWERLESS; out of control. How do we deal with that? I’m not saying I have all the answers to these questions. I’m still struggling with all this myself, but I have come to some conclusions.
When I come to this point of having no control, I turn to Him. He is all-sufficient. Maybe I was brought to this point so that there was no resource within or around me that could help me. I was brought back to His throne. I’m not saying that I didn’t rely on Him before, but sometimes there’s NOTHING ELSE! I have to plug into the POWER SOURCE – plug into God. He is my source for everything. Complete surrender, complete dependence.
“Many dangers beset your path, but I shall keep you if you trust in Me. Many sorrows compass you about, but I give you joy that is greater. Darkness presses you, and doubts arise, but My light, the light of My Holy Spirit, ever burns within your heart to cheer you and encourage you to go on, yes, to go on knowing surely I will bring you out. Look not to your own abilities, for My Spirit EMPOWERS the one who would walk in faith, so that he who is weak need not despair, and he who feels himself to be strong shall learn not to boast; for I bring down the mighty and make strong the weak.”
Frances J. Roberts
Always believing,
Joy Cruse
Sunday, February 28, 2010 2:59 PM CST
This weekend, my heart is saddened once again by the loss of two little angels on earth. I can’t believe that two sets of parents are walking this road with Tait and me. Westin Dietz passed away Friday morning and Carson Richardson passed away last night. Their battle with cancer was courageous and inspiring. Words cannot express this heaviness that encompasses my soul. How I long for a day when cancer cannot steal loved ones from us, when earthquakes don’t devastate cities and children are no longer hungry and in pain. In the midst of this sorrow, I am so grateful for His mercies, which are new each morning. Great is Thy Faithfulness. Without this, what Hope???
I found this story below on another cancer mom’s website. It has a beautiful perspective on the purpose, honor and beauty that is portrayed in Connor’s life, and the lives of these other children who have also been Warrior’s for God. It’s also a beautiful description of how so many have poured out their love on Connor and our family. Thanks to all of you.
The Brave Little Soul
By: John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."
Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.
In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.
I pray that Connor has welcomed Carson and Westin to Heaven and he’s showing them around on streets of gold. Please pray for these sweet families, as the next few days/weeks will be brutal. Thanks.
Always believing,
Joy
Wednesday, January 20, 2010 9:54 AM CST
At the start of a New Year, many of us look back at the previous year. Magazines tell us who were the most beautiful people, what were the best movies, TV shows and best songs of the last year. Newspapers tell us what were the most memorable stories of 2009.
“Neighborsgo” (a local newspaper) takes a look back and catches up with some of the most memorable people and their stories that they shared in their pages last year. Take a look at this story, written by David Alvey, a contributing writer to “Neighborsgo”.
Connor Cruse, rest in peace – July 2009
“No disrespect to any of the celebrities who recently passed, but they did not impact my life nearly as much as one courageous 8-year-old boy.
I will not forget where I was when I heard Connor Cruse of Frisco, who was a student at Prestonwood Christian Academy in Plano, had gone home to be with Jesus, My first reaction was, “Praise the Lord!” Connor is free! Free of cancer. Free of pain and horrendous treatments and boring hospitals. Most importantly, Connor was fee of the earthly bonds that shackle us and weigh so heavy upon us.
Free of limitations. Free of mortality. Free to soar on wings like eagles. Free at last, praise God, Almighty, free at last!
Then a great wave of sadness washed over me. Not sadness for Connor. But sadness for our loss. Not just his immediate family and friends. But the whole mortal world! For those of you who never had the opportunity to meet Connor, it is impossible for me to convey what an incredible person he was.
When he checked into Children’s Medical Center about 10 pm July 9, doctors said he had about 2 hours to live. Connor took his last mortal breath at 4:47 pm July 10.
In honor of Connor, TeamConnor will continue to raise awareness, support families, fund treatments and help find a cure for childhood cancer.”
What a wonderful tribute to our son. Thanks, David.
As I look back over the last year and my life, I take stock of my trials and achievements. I pray that I live my life in such a way as Connor did – making a BOLD difference for CHRIST.
Always believing,
Joy Cruse
Friday, January 8, 2010 2:28 PM CST
As 2009 was coming to a close, initially I was over eager for 2010 to begin. After Christmas, we had two more family members (Aunt Pat and a cousin Missy) pass away. That means we have had 7 deaths in our family in 2009. The loss we’ve experienced this year is more than daunting. At times, it has felt like a burden too large to overcome. I wanted to sprint to the finish line of 2009 and begin 2010 with a fresh start, with a renewed hope that God would restore joy and blessings to our family. I couldn’t make the days fly by fast enough.
After speaking with a friend of mine, who also lost her 4 year old (Caden Ledbetter) to cancer this past year, I saw the end of 2009 in a different light. When 2009 comes to a close, that will be the end of the last year we shared with Connor…. an end of an era, so to speak. I will always remember 2009 as the last year I was able to hold my ConCon, the year we said “good-bye” for now. Suddenly, my perspective changed, I wanted to cling to 2009 harder than ever – not ready to say good-bye to the last year with Connor. It felt as though the close of 2009 was a closing of a door, never to be opened again. It was pulling me further and further away from Connor.
As the New Year approached, you can see why I had mixed feelings. I wasn’t really sure how to look at the ending of 2009. Then, a pastor at our church (Jarrett Stephens) spoke on the topic of Psalm 103, which gave me a blueprint for ushering in the New Year.
1 Praise the LORD, O my soul;
all my inmost being, praise his holy name.
2 Praise the LORD, O my soul,
and forget not all his benefits-
3 who forgives all your sins
and heals all your diseases,
4 who redeems your life from the pit
and crowns you with love and compassion,
5 who satisfies your desires with good things
so that your youth is renewed like the eagle's.
Verse 1 is a personal pep talk. I know I’ve needed those from time to time. In order to finish my first half marathon, I was giving myself a pep talk the last couple miles. King David obviously didn’t feel like praising the Lord at this time in his life, so he had to remind himself to do it. I know how he felt.
“Forget not his benefits.” Before I can look forward to the New Year, I need to reflect on my past and remember the blessings and the faithfulness of God. It’s so easy to focus on all that I have lost this year, but when I look back, I can also see the many blessings that God has afforded me. I see loss, but I also see many moments of joy, kindness and treasured memories. I’m really trying to focus on those bright spots of 2009.
He forgives us our sins (huge blessing), giving us an opportunity to spend eternity with Him. That is also making it possible for me to see Connor again. God is more concerned with where we spend our eternity, than on the number of days we spend here (although He is concerned about How we spend our days). What a blessing that He has provided a way for our eternal salvation.
I’m counting on the promises of verse 4 and 5. I feel as though I’m in the pit, but I’m waiting on God to redeem this situation. I’m ready for Him to satisfy my desires with good things. I’m praying that 2010 will be a year of redemption and good things!!!
Always believing,
Joy
Tuesday, December 22, 2009 11:19 PM CST
As Christmas approaches, I’m filled with mixed emotions. My family is joyously celebrating our Savior’s birth and gratefully counting our blessings. As my heart sings in response to this wonderful time of celebration, it also aches for the one gift I want most and won’t receive this Christmas – my Connor back with us healthy and whole. I feel like the spoiled child who says “If I can’t have that, then I don’t want anything at all.” So, I approach this Christmas with trepidation. I’m not sure how we will get through the next few days, but I’m counting on God to get us through.
A couple weeks ago, Connor’s Third Grade Class dedicated their Christmas choir performance to Connor. They also recited this poem “My First Christmas in Heaven” during the performance. Tonight, the kids and I talked about how Connor can wish Jesus a “Happy Birthday” in person this year. As we look back on 2009, we remember other family members who will be spending their first Christmas in Heaven, too. We will miss Papa Burt, Grandma Mann, Uncle Al and Aunt Loretta. I’m sure they are all having quite a celebration
My First Christmas in Heaven
I see the countless
Christmas trees
around the world below
With tiny lights, like Heaven's stars,
reflecting on the snow
The sight is so spectacular,
please wipe away the tear
For I am spending Christmas with
Jesus Christ this year.
I hear the many Christmas songs
that people hold so dear
But the sounds of music can't compare
with the Christmas choir up here.
I have no words to tell you,
the joy their voices bring,
For it is beyond description,
to hear the angels sing.
I know how much you miss me,
I see the pain inside your heart.
But I am not so far away,
We really aren't apart.
So be happy for me, dear ones,
You know I hold you dear.
And be glad I'm spending Christmas
with Jesus Christ this year.
I sent you each a special gift,
from my heavenly home above.
I sent you each a memory
of my undying love.
After all, love is a gift more precious
than pure gold.
was always most important
the stories Jesus told.
Please love and keep each other,
my Father said to do.
I can't count the blessing or love
has for each of you.
So have a Merry Christmas and
Wipe away that tear
Remember, I am spending Christmas with
Jesus Christ this year
Please pray for us and the other families who have lost loved ones this year, like the Ledbetter and May family. Also, please pray for my cousin, Missy. She has cystic fibrosis and is 35 years old. She’s in the hospital and not doing well at all. They are not sure if she will pull through this time.
Always believing,
Joy Cruse
Monday, November 16, 2009 10:18 AM CST
JOURNEY WELL
I’ve learned that it’s less important to pray for how we want the journey to end than it is to pray that we would “journey well.” A friend of mine who is battling cancer said, “You can pray for healing for me if you feel led to, but my prayer for myself is that wherever God directs my journey, that I would journey well”. To me, that says it all. If we are praying this way, then we are truly lined up with God’s will.
I know that when we are faced with a scary prognosis, an unsure future or huge burden, we often times pray for God to remove the trial from our lives. We want him to fix the situation; remove the thorn from our side. How many times did I pray that for Connor? Instead of praying this way, maybe we should pray for God’s grace to carry us through whatever lies ahead and that God would redeem the situation.
I know this is easier said than done. I was the first one down on my knees praying for Connor’s healing. I don’t think that God wants us to quit asking for the desires of our hearts, but He does want us to surrender to “His will be done.”
So, as for me, when I pray for myself or others facing trials, I pray that we would journey well. God, carry me through this dark valley in such a way that would glorify you and redeem this situation.
“Out of much tribulation I bring forth a people for the GLORY of My Name. I am shaping you in the furnace of affliction that I may set My seal upon you and display in you My own identity. I desire that you be one with Me in all I have purposed, and as I move in the earth today to REDEEM the lost and deliver the captives, you are moving with Me whenever your soul and spirit are yielded to Me as an open channel of prayer in the Spirit.” Frances J. Roberts
"Run in such a way as to get the prize. Everyone who competes in the games goes into strict training. They do it to get a crown that will not last; but we do it to get a crown that will last forever."
I Corinthians 9:24,25
Always Believing,
Joy
Thursday, November 5, 2009 10:14 PM CST
Last week I mentioned how my heart had been stretched to learn new lessons. This week, I want to mention something else I’ve learned.
I’ve learned to surrender what is most important to me.
As most of you know the week leading up to Connor’s home-going was very stressful. His feeding tube had fallen out on July 4 and he was not getting any nutrients and he was severely dehydrated due to the fluids/food just flushing right through him into his colostomy bag. That whole week, we spent everyday at a hospital trying to fix the feeding tube, to no avail. On Thursday, July 9th, another feeding tube was placed in Connor’s abdomen. (They did this without putting him to sleep and he handled it SO WELL). When we arrived home, we realized the new tube was leaking and this tube did not fix the problem.
Shortly after we realized this, I got a phone call from the doctor in regards to Connor’s labwork. His red blood count and platelets were low again and he would have to go back to the hospital Friday for more blood and platelets. The doctor also informed me that his BUN level was extremely high, which meant Connor was dangerously dehydrated. If he started hallucinating or became non responsive, we should bring him into the ER as soon as possible.
At this point, I was so worn out. It didn’t matter how hard I tried to fix these problems, to fix Connor, if God didn’t choose to HEAL Connor, it was all in vain. I could only do so much. It was like running on a treadmill. I was spending all this energy and all this time, but I wasn’t making any progress for Connor.
Outside on our patio, Mom, Tait and I prayed. We prayed that God would either heal Connor or take him home. We knew that we were not selfish enough to want to keep Connor here the way he was. If His ultimate plan was not to heal Connor, then we wanted God to relieve him from his suffering. We surrendered our precious Connor into God’s Hands. We prayed for a sign. A couple of hours later, Connor became non-responsive and we called the ambulance, which led us to Children’s at Legacy and Connor’s last 24 hours..
It is so hard to relinquish what we love SO MUCH to God, back to our Father and Creator. We want to hold on with all we have to what we hold dear. It was so hard to let him go, yet we knew in our hearts it was right.
Just as my daughter, MacKenzie, (in her wisdom) read to Connor on his last day, we should surrender ourselves to his will. This is the verse MacKenzie read to Connor. When Jesus was in the Garden of Gethsemane waiting for the soldiers to come take him, he said to his Father in Heaven, “My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will.” Matthew 26: 39
Always Believing,
Joy
Monday, October 26, 2009 11:44 PM CDT
I once read that when you experience loss, your heart expands to handle the grief. When that happens, your heart is then larger to grow more, love more and experience more. I guess it seems to be in a raw state and it’s alive and open to every sensory experience. It's similar to what happens to our muscles when we lift weights. The muscle tears a little at first, and then it enlarges. Tait and I can relate to this. I definitely feel like my heart has expanded to handle this grief. It is feeling everything more deeply. I feel sadness more and joy more. Excitement and depression are both experienced to a higher degree. My heart is open and ready for growth now. It is craving understanding, wisdom and assurance. I guess because of this, I feel as though I've grown a lot in the last few months.
My heart has learned many things.
I’ve learned that although God’s grace is what spares us from disaster or loss, His Grace is poured out on us even more when we are not spared from the disaster or loss. I’ve seen several children spared from Connor’s fate and yes, God’s Grace spared them. But, I can tell you that if He has allowed you to go through the loss, He will sufficiently provide the Grace to go through it. How much more important is His Grace then.
I love this quote below from Dr. Alan Redpath.
"There is nothing—absolutely no circumstance, no trouble, no testing that can ever touch me until, first of all, it has gone past God and past Christ right through to me. If it has come that far, it has come with a great purpose which I may not understand at the moment. But as I refuse to become panicky, as I lift up my eyes to Him, and I accept it as coming from the throne of God for some great purpose of blessing to my own heart, no sorrow will ever disturb me, no trial will ever disarm me, no circumstance will cause me to fret, and I shall rest in the joy of what my Lord is. That is the rest of victory."
As his hand is on my life, I'm counting on God to bring me through even this to victory. I'm believing his Grace will revive me again.
"You, who have shown me great and severe troubles, shall revive me again, and bring me up again from the depths of the earth. You shall increase my greatness, and comfort me on every side." Psalm 71:20, 21
Please continue to pray for Carson Richardson, as they try to figure out what treatment to try for Carson next. They are looking for a miracle. Also, please pray for our Carson. He broke his arm yesterday at Mason's 4th birthday party! Happy Birthday Mason!
Always believing,
Joy Cruse
Thursday, October 15, 2009 11:16 PM CDT
an update from Tait:
It was Connors birthday on Oct 2nd -he would have been 9 years old. Now that it has been three months since his passing, my family and I are now just waking up.
I don't update much, with Joy's wonderful thoughts in words. But wanted to write and share with you the peace we have in the midst of this "sucker punch" we took on July 10 2009.
The only way I can describe this journey is: "Holes and Shadows".
Holes where the dreams of a Son growing up in our family are gone....
Shadows where he WAS and where he graced us for eight and a half wonderful years....
The peace from God has surpassed all understanding and we as a family are experiencing it daily. Dont get me wrong -this is the hardest thing we have and probably ever will go through. But, we know that our Lord is here and walking with us in this valley. And, we thank you for walking with us.......
2 Samuel 7
18 Then King David went in and sat before the LORD, and he said:
"Who am I, O Sovereign LORD, and what is my family, that you have brought me this far? ..."
Wednesday, October 7, 2009 5:09 PM CDT
"Did I arrange the light of your first day?
Did I create the rhythm your heart makes?
Could you believe when your candle starts to fade?
I want to be the One that you believe
Could take it all away, take your heart away
Was I there for the worst of all your pain?
And was I there when your blue skies ran away?
Was I there when the rains were flooding you off your feet?
Those were My tears falling down for you, falling down for you
I’m the One that you’ve been looking for
I’m the One that you’ve been waiting for
I’ve had My eyes on you ever since you were born
I will love you after the rain falls down
I will love you after the sun goes out
I’ll have My eyes on you after the world is no more"
I was listening to this song when I was running last Friday on Connor's birthday. I couldn't help but think of Connor. The words of this song "After the World" by Disciple just rang so true for me. God arranged for the light of Connor's first day. He created the rhythm that his heart made. He was there for Connor when the sun set on Connor's little life on earth and He'll be there for him when this world is no more.
I know that for all of us, God has a purpose. For some of us, we will have to live a long life to fulfill that purpose. For others, like Connor, our purpose doesn't require a long life.
In Sunday School, our teacher was talking about Jesus' purpose on earth. His ministry started at the age of 30 and he had about 3 1/2 years until his death on the cross and resurrection to complete his purpose on earth. He had to pack a whole life of ministry into 3 1/2 years. I never really thought about how much He accomplished in such a SHORT time.
Our teacher also mentioned how John the Baptist was always preparing the way for the Messiah in his messages to the crowds that followed his teachings. At one point, he introduced Jesus to the crowd of people and baptized Him. God spoke to the crowd at this time, announcing that Jesus was his son. Shortly after, John was imprisoned and executed. He had fulfilled his purpose of leading the way for Jesus.
When I think of Connor, I know that God fashioned him in my womb 9 years ago and He had a plan for him before time began. God had a plan and a purpose for Connor and he carried out his purpose in such an outstanding way. I can just imagine God saying to him, "You got your job done, so you get to come HOME early."
I ask myself today "How well am I carrying out His purpose in my life?" Will I have just a few short years to carry out my purpose or will I have a long life to pursue this? Either way, I want to do my job well, just like Connor.
Always believing,
Joy Cruse
Tuesday, September 29, 2009 4:05 PM CDT
This week has proven to be challenging for the Cruse family. Friday is Connor's birthday. More than usual, thoughts of Connor run through my mind. I can't seem to shake an overall sadness. It seems to cling to me and I can't release it. I want to celebrate the gift that Connor was and is to our family, but with the celebration comes a sense of loss. It's a reminder that I cannot hold him this year for his birthday. No happy dance and no bright smile for me to see. We cannot celebrate his physical life on earth this year, but we try to focus on the gift of his Eternal Life with Christ.
As I think of Connor's birthday, I can't help but think of the other children who will be celebrating birthdays this fall. Many of his closest friends had birthdays in the fall season and I know that their minds fall to Connor, too, as they enjoy their own birthdays. Many of them have denied themselves birthday presents so that their friends would donate money to TeamConnor or donate toys for Children's Medical Center, instead. Or, they have invited our whole family to their birthday party, so we will still be a part of their celebration. It's the closest thing to having him there at their party. It may be bittersweet for them this year.
I guess for this journal entry, I have a prayer request. Please lift up a prayer for these children who have known and loved Connor. I know many of them still struggle with their grief. They also wrestle with their faith and lack of understanding of "why" this happened. They prayed so fervently for Connor, and it is such a hard lesson for all of us when God doesn't answer our prayers the way we expect Him to.
Here's a poem that Connor's friend, Mollie Claire, wrote for him and she read it to him at the burial. She mentions the many birthday parties that they shared over the years, as she was born one day after him.
"My sweet friend had lots of glory.
Listen now while I tell you his story.
Connor was born three weeks early as healthy as can be...
The very next day, three weeks early I came, his oldest friend, that's me.
As babies we pushed each other in cars, played in the sand, even a bath or two.
We sat up, we crawled and learned to walk...each stage together we grew.
Our first birthday, our high chairs were full of cake and messes...
As toddlers, our sisters put us in matching dresses.
Our birthday parties together were always a huge affair.
We had pony rides, bowling, bounce houses and boot camp, we just had to share.
Rides at Disney World, skiing in Whistler, and climbing Diamond Head with no stop.
Stuffing sand in his shorts, riding paddle boats and calling my dad a "muffin top".
We accepted Christ just weeks apart and took the New Christians class together.
With Sayers in our trio, we followed in baptism one after another.
Jesus was first in Connor's life. He slept to his favorite praise songs.
Although his body was weak, he continued to fight and always stayed strong.
My last date with Connor was breakfast at IHOP.
We were planning our 9th birthday... a drive in movie and sock hop.
Connor taught me to keep on going, without complaining. There is always so much to say.
As I last whispered in his ear..."I love you Connor and it will always be our birthday!!!"
HAPPY BIRTHDAY, SWEET CONNOR! HOPE YOU'RE HAVING A GREAT BIG BIRTHDAY PARTY WITH JESUS! I BET THE BIRTHDAY CAKE IS GREAT UP THERE!
Always believing,
Joy
Sunday, September 20, 2009 6:28 PM CDT
As I continue to pray for other children facing this dreaded disease, cancer, and I follow their continued battles, I see a mixture of outcomes and unique stories. In one week, I have read a website of one child (Westin) who has seen the miraculous hand of God in his new “No Evidence of Disease” status after a relapse with Neuroblastoma months ago. Then there is the website for Mackenzie, whose prognosis is “there is nothing more the doctors can do.” And, I read Caden’s website as his mother describes Friday as “today is my birthday and tomorrow I will bury my son.” Caden Ledbetter passed away a week ago Saturday and now his family is facing the same loss that we are facing. Please pray for his family.
For Westin, it is easy for us to say “God’s grace.” The miracle for him was indeed the working of God’s grace in and through his life. But what can we say for MacKenzie, Caden and Connor? Surely, God is watching over all of these children. Surely, He heard all our prayers. How do we come to terms with the different outcomes for these children?
Do I believe in a mostly indifferent, distant God who rouses himself only now and then to spill a bit of benevolence on a hurting humanity? Or a weak God who only helps us by chance, surprising us with a drop or two of grace, a spared hand, a reprieve from pain, and then finds himself again helpless, limp? Which picture of God is easier to comprehend, easier to worship?
It is easy to speak of God’s grace when we wake healthy, when rain falls on our fields, when we fill our plates and stomachs. But what if my bones were pitted with agony, our crops wilted in parched ground, our children’s bellies swelled with starvation? What of God’s grace then?
In the circumstances for Connor and Caden, what is God’s grace?. With unwavering faith of fissured hearts, can we stand in funeral parlors and say, “The Lord gives and the Lord takes, blessed be the name of the Lord”? Do we have the kind of granite faith that says “Shall we accept good from God, and not trouble”?... “Though the fig tree should not blossom, nor fruit be on the vines… and the fields yield no food… yet I will rejoice in the Lord” (Hab. 3:17-18).
If I reject the notion of a God who generally remains aloof (or powerless), one who only randomly intervenes with a meager sprinkling of grace, I am left face to face with a God who gives grace and saves one child’s hand… and gives grace and let’s a child die.
I am left with the alternative: a God who gives what I may not perceive as good. Is that the essence of who God is? Is such a God worthy of worship?
“Surely, just as I have intended, so it has happened, and just as I have planned so it will stand” (Isa. 14:24). A sovereign God who intends, whose plans stand.
“And [Eli] said, ‘It is the Lord; let Him do what seems good to Him’” (1 Sam. 3:18).
The elemental essence of this debate is this: He who orchestrates the incremental, finite details of this universe does what seems good to Him. Not to us. To us it may seem catastrophic, hideous, nauseating. Pint-sized coffins, wandering orphans, monster tsunamis; the stuff of a sin-ravaged, pain-throbbing planet. But the heart of God pulses at its gory center.
“What is needed, then, is to see God in everything, and to receive everything directly from His hands, with no intervention of second causes…,” writes Hannah Whitall Smith in 1875. “To the children of God everything comes directly from their Father’s hand, no matter who or what may have been the apparent agents.”
The fingerprints of God smudge everything. His heart beats everywhere. The contours of His face surface in every moment. I confess: something in me recoils when I think of hurricanes, dark corners and violated innocence, splintered souls and mossy gravestones.
But I am left with the haunting question, echoing off soul walls: Do I take it not as cliché but as stone truth, believing in the marrow of my frame, that He’s meaning it all for good (Gen 50:20), persistently working all things together for good (Ro. 8:28)? That He is who He says He is: good. He claims to be a God of “light and in Him is no darkness at all” (1 Jn. 1:5). Can I take Him at His Word? Haven't I known Him as the light piercing through my darkness? Hasn’t He been my comfort and my peace in times of trouble? And I trust His heart, His Word: He does not “willingly bring affliction or grief to the children of men” (Lam. 3:33).
What may seem good to us may actually be but a means to lead us to a better good---that seems more painful. What may seem adverse to us, in the plot line of the Storyteller, is for our ultimate betterment.
God’s story lines in the lives of His children are formulaic: they are all good. The events may jarringly twist and surprise, even seem to pry out our heart, chunk by mangled chunk, but, in the fullness of time, there are no bad endings. He has provided a way for us to spend eternity with Him.
Yet even this is practice, as trivial as it seems. This is daily soul-stretching, the exercise of bending knee to His Sovereign perfect will. This learning to say, "All is grace.”
Regardless, nonetheless, always: "God's grace, God's grace." All that happens becomes bread to nourish, soap to cleanse, fire to purify, a chisel to carve heavenly features. Everything is a channel of His Grace.
I want to thank Ann Voskamp and her website for some of this perspective on God’s grace.
Always believing,
Joy Cruse
Thursday, September 10, 2009 10:04 PM CDT
It was 2 months ago today that Connor left this earth to reside in Heaven. A somber day for our family. I recently completed a Bible Study called "Anointed, Transformed, Redeemed." The author, Beth Moore, spoke on the topic of getting past our devastation with God. It spoke to me so completely.
"Nothing has the capacity to cause more destruction in a believer's life than an occurrence that makes us question everything we thought we knew about God. A heart can shatter in so many pieces that we don't think even God could put it back together again. Words fail, but far more consequentially, faith often fails."
We may find ourselves in a predicament where we question God's goodness and His sovereignty. I know that Tait and I had many questions after Connor's death. I know that Satan would love nothing more than to convince us that God is not good after all.
Beth Moore explores the story of John the Baptist in prison to illustrate God's sovereignty, and His ultimate Healing and plan for our lives - plan for us to spend eternity with Him.
In Luke 7:18-23, John was in prison waiting to be executed and he sent his disciples out to ask Jesus if He was truly the one that they had been waiting for. Was He the Messiah? Jesus replied to them, "Go back and tell John what you have seen and heard: The blind receive sight, the lame walk, those who have leprosy are cured, the deaf hear, the dead are raised, and the good news is preached to the poor. Blessed is the man who does not fall away on account of me."
As we know from John's story, not only did Jesus allow John to be imprisoned, but He also allowed him to be executed. But, this did not cause John to "fall away" from God even though He did not rescue John from his untimely death. Just like John, God didn't heal or rescue Connor the way we had hoped and prayed for, but more importantly God healed and rescued him in a much more miraculous way. He rescued him from sin and death for all eternity.
Just like the miracles Jesus was performing on the masses described that day in Luke 7, He also caused Connor's "blind" eyes to open on July 10, 2009. His eyes opened to the very FACE of GOD.
He caused Connor's "lame legs" to DANCE on the streets of gold. No more wheelchair for Connor.
He caused his "leprous" sin to be CURED for all eternity.
The "dead" was indeed RAISED and Connor heard the best news of all (without his hearing aids) "WELCOME HOME, My good and faithful servant! Enter into your Master's happiness!"
Sometimes there's just a bigger plan. The knowledge that God has a bigger and better plan for us gives me comfort and reminds me that God is still good- all the time.
Always believing,
Joy
Monday, August 31, 2009 9:35 AM CDT
Days continue to march on and the world continues to spin on its axis. It doesn't seem possible that everything continues in a normal way without our little ConCon here. But, it does. I know it will take some time to get used to our new normal, once again. Thank you for your continued prayers for us in this direction. We feel like God is cushioning us from the full impact of our loss. It seems as if we take it all in a little bit at a time, which is much more manageable for us all. Grief in small stages is certainly easier than handling it all at once.
Yesterday at church, Neil Jeffries, spoke to us about the little boy with 2 little fishes and five loaves of bread that Jesus used to feed over 5,000 people. John 6:9 says "Here is a boy." It sounds so simple, yet there is so much about this boy. He was insignificant, so much so that his name isn't even mentioned in the story. What he had was insufficient - it was not even close to being sufficient enough to feed 5,000 men. Yet, God used this little boy and what he had to offer to do a miracle that day on the shore of the Sea of Galilee. God used what was insignificant and insufficient and he did something mighty with it! He can do that in all our lives. It doesn't matter how much we have to offer, it only matters that we give Him ALL we have to give. The GIFT isn't as important as it is in whose HANDS we place the gift.
The whole time I was sitting listening to this message, I couldn't help but think of Connor. "Here is a boy" I thought to myself, who was insignificant and insufficient and look how God chose to use him. I'm still amazed everyday how I'm witnessing God's redemption of Connor's life. Countless people have told me how Connor has changed their lives, how he taught them to be strong and courageous, how he taught them to fight and remain faithful to God in all circumstances and how he taught them to pray. Even today, God is still using Connor. In the next few months, I'll be sharing with you the mighty ways that God is still using Connor to bring glory to His name. We have several things that are in the beginning stages. It is just amazing! The love and support of TeamConnor is another great example of how God is using Connor's life to make a difference for other children.
I know many times I feel insignificant and insufficient myself. I can't fathom how God can use me to do something great and significant. Connor and this story in the Bible will always remind me that I'm just the clay and God is the Potter. If I let Him, God can make something beautiful out of a piece of clay, out of something insignificant and insufficient like me.
"Yet, O Lord, you are our Father.
We are the clay, you are the potter;
we are all the work of your hand."
Isaiah 64:8
"But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us."
2 Corinthians 4:7
Please continue to pray for Caden Ledbetter and McKenzie Mae as they need a miracle of healing, since the doctors don't have any curative treatments left for them. Also, please pray for Carson as he is having fear issues since Connor's passing. He's also having a hard time without his constant companion, ConCon.
Always believing,
Joy Cruse
Saturday, August 22, 2009 10:19 PM CDT
MacKenzie and Carson started school this past week. I think it was good for them to get back to their school and their friends. For them, home is a much more difficult reminder of Connor's absence. School will be a welcome relief for them. It was a little harder for me and Tait. I was so relieved that the 3rd grade hall was not close to Carson's class this year. It was weird just going into just two classrooms to take pictures and give hugs to start the new school year. It felt like we were forgetting something. I guess this is just the beginning of new "firsts". We'd appreciate your prayers for this "new normal".
I heard this song on the radio the other day. It is a song called "Heaven is the Face", by Steven Curtis Chapman. He wrote it about his little girl who passed away several months ago in an accident. It struck home with me. I can so identify with him that Heaven is not just where Jesus lives anymore, but where my little boy lives, too. That's what Heaven is for me now.
"Heaven is the face of a little boy
With blue green eyes
That disappear when he smiles.
Heaven is the place
Where he calls my name
Says, “Daddy please come play with me for awhile.”
Chorus:
God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m aching for.
God, you know, I just can’t see beyond the door.
So right now...
Heaven is the sound of him breathing deep,
Lying on my chest, falling fast asleep while I sing.
And Heaven is the weight of him in my arms,
Being there to keep him safe from harm while he dreams
Bridge:
But in my mind’s eye I can see a place
Where Your glory fills every empty space.
All the cancer is gone,
Every mouth is fed,
And there’s no one left in the orphans’ bed.
Every lonely heart finds their one true love,
And there’s no more goodbye,
And no more not enough,
And there’s no more enemy (no more).
Heaven is a sweet, maple syrup kiss
And a thousand other little things I miss with him gone.
Heaven is the place where he takes my hand
And leads me to You,
And we both run into Your arms.
Oh God, I know, it’s so much more than I can dream.
It’s far beyond anything I can conceive.
So God, You know, I’m trusting You until I see
Heaven in the face of my little boy."
Always believing,
Joy
Thursday, August 13, 2009 8:16 PM CDT
Tait and I were in New Canaan, CT this past weekend participating in the TeamConnor 500 for 500 Relay. Our friends, Matt and Tonya Russo host this event each year. Runners take turns running 5 mile legs at a time, until we reach our goal of 500 miles. The Russo's home is the home base. Each runner runs a five mile loop in the neighborhood, ending their leg where they started - at the Russo's house. This run is so gorgeous. The surroundings are so beautiful and the weather was perfect (a lot different than our hot weather in Texas). All the sponsorship funds go to TeamConnor. I think the run this year will raise $150,000 or more.
It is a tradition for Tait and I to end the race. As we complete the last five miles of the relay, we run uphill for approximately 1/8 of a mile. At first, you cannot see the finish line. You just know it is coming up ahead. Then, you starting hearing the noise. At first, it is a distant whisper and it slowly grows louder. Then, you recognize it. It is the shouts of encouragement and joy. It is clapping and cheering that conveys everyone's love and support of you. Eventually, their faces come into view. Huge smiles light up their faces as they cheer you on to the finish line. I felt a rush of love, joy and accomplishment.
All I could think of at that moment was this must be what it is like to enter Heaven (times 1,000 or 1,000,000). How wonderful Connor must have felt to have family and friends cheering him HOME! He must have been beaming! I can just see his little legs picking up pace, running faster than he ever has. I'm sure as Connor approached, they were slapping him High Fives and giving him "knuckles". They were patting him on the back. Then the group separated, forming two lines that ushered him down the center. At the end of the line, he must have looked up into Jesus' face. Wow! I don't even know how to describe what that must have felt like. Knowing Connor, he probably reached out and gave Jesus one of his famous, fantastic hugs. Oh, what a hug that must have been! I'm sure Connor felt loved and cherished as never before.
As much as we miss Connor, Tait and I could never wish him back here - back to the challenges and pain that this life offered him. Never wish him away from the One that loves him more than anyone. We find comfort and peace in the assurance of Heaven for those who believe.
“He will swallow up death for all time, and the Lord GOD will wipe tears away from all faces.”
Isaiah 25:8
Even after my skin is destroyed,
Yet from my flesh I shall see God;
Whom I myself shall behold,
And whom my eyes will see and not another.
Job 19:26-27
Please pray for our friends, McKenzie Mae (www.caringbridge/visit/mckenziemae) and Caden Ledbetter (www.caringbridge/visit/cadenledbetter) . They have relapsed with Neuroblastoma and are faced with a future of not a lot of medical hope. Their hope lies in a miracle from God.
Always believing,
Joy Cruse
Tuesday, July 21, 2009 10:59 PM CDT
My heart overflows with gratitude and love for all of you who have faithfully prayed for my son over the last 50 months, and now continue to pray for my family as it is now our turn to heal. The outpouring of love and support at the visitation and service was incredible. Thank you for honoring my son's life that way. Your words of encouragement and stories of how Connor has touched your lives has brought us such comfort as we walk through these difficult days. We can not thank you enough.
Many of you requested that I continue my blog. As always, these updates help me to heal and help me to work through the understanding of what God is teaching me. I will continue to update weekly to share how God is carrying us through this dark valley and how he is redeeming this situation. That is what He does, isn't it? Bring good out of something bad. Bring water to the desert and bring joy to our sadness. Our eyes and hearts are open to what He is accomplishing in our lives.
"We know that in all things God works for the good of those who love Him, who have been called according to His purpose." Romans 8:28
Here's a letter I wrote to Connor for the service. One paragraph was read during the service, but here is the letter in its entirety.
Dear Connor, My valiant warrior,
I know as a mother, I am supposed to be the one who teaches her children; who imparts wisdom and insight for life. How is it then, that you were the one who taught me? You taught me how to enjoy life, with your radiant smile, your silly ways and your happy dance. You were always looking for an adventure, whether it was dodge ball in the back yard with your family, or sword-fighting with your friends in our fort or races in the halls of the hospital. Nothing could contain your love of life.
You taught me how to love. No one could pass by you without a hug from ConCon. You had a love that was irrepressible, it overflowed and was passed out to others as easily as you breathed. It was as if you knew you only had a short time with us, so you had to send out all your love in just 8 ˝ years. Oh, how you made us feel special.
You taught me how to fight valiantly. How many times have I watched you suffer bravely through pain that would have caused most people to quit? How many times were you knocked down, only to rise again stronger the next time? You were so tenacious, never giving up. Even in the end, your body gave up before your fighting spirit did. You had the heart of a lion. You amazed the doctors from Dallas, to Boston, New York, Houston and even Guatemala. How many times was your prognosis not good, yet you continued your battle without a falter in your step. What a brave warrior you were. How could I not fight so hard for you, when your spirit was so strong?
You taught me how to dance in the rain. Although half of your life was spent battling this disease cancer, you never let it stop you from enjoying life. You never made room for complaining. You would be healing from surgery or recovering from chemotherapy and you would still show up at baseball practice. You wanted to experience it all. Nothing stopped you from absorbing all the joy possible. Even your last week with us, you went to Gatti town, the movie Ice Age, the bookstore, Lego store, the mall and your favorite restaurants. Live, enjoy, cherish! was your motto!
You taught me about faith and loving your Heavenly Father. You never once questioned God’s goodness during this journey. You always expected healing to come. You knew your Father would never leave you, nor forsake you. You wanted to tell the world about Jesus. Your words of encouragement to others battling cancer were, “Have courage and believe in Jesus.” That says it all. And that's what you did. You walked your talk.
I know that we have all said that you lost your battle with cancer last Friday. But, as I think about it, I realize you actually won the battle. We often think it is a tragedy when one so young passes away, but maybe we are looking at this all wrong. I think your REWARD, my sweet son, for your faithful, brave battle is that you are now dancing on golden streets in Heaven, holding Jesus’ hand. You have shed the pain and struggles that accompany a life on this earth and you are now rejoicing with the angels and feeling love like you’ve never known. How can that be any kind of battle lost?
Well done, my good and faithful son. We love you and will miss you. Enjoy your well-earned reward!
Always believing,
Joy
Friday, July 10, 2009 8:10 PM CDT
Connor went to heaven today at 4:47 pm, finally free of cancer. Please pray for his family.
Tuesday, July 7, 2009 9:40 PM CDT
Connor has started fluids at home and the TPN (nutrition thru his iv). Yeah! WE all did a happy dance when it started. Finally, Connor will get some nutrition. He really needs to gain some weight. He's SO thin.
His sodium levels continue to rise. They were 121, now 128 and needs to be 135 and above. His breathing and oxygen is good, and the swelling on his legs continue to decrease. Praise God.
Now, for the hole in his abdomen. Surgery is not a good option for him right now, mainly because his sodium is low. He will not metabolize the anesthesia well and would possibly be at risk for seizure and not waking up. WE are looking at two other options that would be less invasive and don't involve anesthesia.
The best option is to use a fibrin glue to close the hole. It is used often in adults and has an 80% success rate to close the hole. It is kind of like "fix- a-flat". They would use local anesthesia and just use a needle to put the glue on the hole. The doctor who could do this at Children's has not done this before. She's consulting an adult doctor who does this frequently-our friend who gave us the idea - to get the information and decide whether or not she will do this. Please pray that she will decide to do the procedure and she can schedule it soon.
The second option is to put another type of feeding tube in (one that is larger than the old one) that would plug the hole. We wouldn't use the feeding tube, it would just be used as a stopper. The fluoroscopy department has to be used to guide the tube to the exact spot of the hole, otherwise it won't work correctly . This would also take a couple days to schedule.
Neither one of these are guaranteed to work. There could be other issues that make these options less viable. PLEASE, PLEASE PRAY THAT WE CAN GET SOMETHING SCHEDULED THIS WEEK AND THAT IT WILL WORK. Doctors always prepare you for the what ifs, which leave my head swimming with doubts. WE really need God to resolve this issue. Connor eats and drinks constantly (even thru the night) because he never feels satisfied. We can't be sure that Dr. Rodriguez's medicine is absorbing completely.
I can't believe that God would bring us so far, to have this obstacle be impossible to overcome. Thanks for your prayers. I will let you know when something gets scheduled. Thanks for your prayers in this matter. Greatly needed. WE just need to trust God to bring us past this new obstacle. Trusting Him is the only thing that gets us through.
'Tis so sweet to trust in Jesus,
and to take him at his word;
just to rest upon his promise,
and to know, "Thus saith the Lord."
Refrain:
Jesus, Jesus, how I trust him!
How I've proved him o'er and o'er!
Jesus, Jesus, precious Jesus!
O for grace to trust him more!
I'm so glad I learned to trust thee,
precious Jesus, Savior, friend;
and I know that thou art with me,
wilt be with me to the end.
(Refrain)
Recognize that old hymn?
Always believing,
Joy Cruse
Sunday, July 5, 2009 1:21 PM CDT
We've had a roller coaster of events the last few days. I'll start with my thankful praises first. I'm just amazed to see any improvements at this point. Connor's appetite continues to improve. He's hungry almost all the time now. He's so excited. He keeps saying, "I think my appetite is back." This has changed quickly. A week ago Friday, he wouldn't eat or drink anything. This week has brought big changes in his appetite.
Secondly, his breathing and oxygen levels are much better. 4 weeks ago, in Plano Presby Hospital, his oxygen levels were around 88. That is why they recommended the oxygen at home. Now, his oxygen levels are around 94-95. Isn't that amazing? His resting heart rate was in the upper 140's. Now, it is around 115 (normal range). Also, the swelling continues to decrease on his legs. The water is coming off his legs so quickly, there are usually small puddles at his feet. His back is more comfortable when he sleeps now. There's no other explanation for these changes except that the tumor is shrinking/softening and relieving pressure on his lungs and blood vessels. Also, his white count continues to soar. It was up to 46,000 and is now at 40,000. Patients with this amount of tumor burden usually have a very low white count. Praise God for all this!
WE are just show shocked and overwhelmed. After almost 6 months of a downward spiral, we just keep pinching ourselves that we are actually seeing the EVIDENCE of improvement. "Now faith is being sure of what we hope for and certain of what we do not see." Hebrews 11:1 It's so awesome to finally see some evidence of what we've been believing for so long. Don't get me wrong. I know we still have huge hurdles (MOUNTAINS) to climb, but it is so encouraging to be going in the right direction.
Now, for the new prayer requests. We've been having problems with Connor's feeding tube. It's been leaking. The swollen stomach pulled the skin away from the tube, causing a leak. The leak got worse and the hole got bigger. Last night, the feeding tube was dislodged ( and out came all the food he'd just eaten). We rushed down to Children's ER. The surgeon looked at it and he just pulled the tube out. Right now, Connor has an ostomy bag to collect the food he is eating as it come out this hole. It's quite an interesting site. About 30 seconds after he eats something, the food comes out this hole. PLEASE PRAY WE CAN GET SURGERY SCHEDULED WITHIN THE NEXT TWO DAYS TO CLOSE THIS HOLE. He's getting no nutrition right now. Monday, Home Health is supposed to hook Connor up to TPN (nutrition that goes directly into his blood stream). This TPN with Connor's increased appetite should help him gain his weight and strength back. His face is so thin, it is shocking the first time you see him like this.
Secondly, his sodium is really low. They kept him overnight to see if they could raise it. The sodium level didn't come up much. We understand why it is low - he's sweating out all this fluid and losing salt this way and his food just leaks right out of him. We just don't know why the sodium level won't rise. PLEASE PRAY THAT THE SODIUM LEVELS WOULD RISE. Low sodium will make him at a risk for seizures. He should be coming home this afternoon.
Thank God for his wonderful grace and mercy and Connor's improvements. Please continue to pray for old and new prayer requests.
1. complete healing on earth
2. tumor shrinkage
3. his breathing and heart rate would stay in the normal range
4. his appetite would continue to increase
5. sodium levels rise
6. surgery soon to close the hole in his abdomen.
7. Glorify God through all this!
8. Grace to get through each day.
"They loathed all food and drew near the gates of death. Then they cried to the Lord in their trouble, and He saved them from their distress. He sent forth His word and healed them; He rescued them from the grave. Let me give thanks to the Lord for His unfailing love and His wonderful deeds for men. Let them sacrifice thank offerings and tell of His works with songs of joy." Psalm 107:18-22
Always believing,
Joy Cruse
Wednesday, July 1, 2009 9:54 PM CDT
We've seen some small improvements. We've seen some visible changes in his swelling. Still praying for more to come! He still has about 20 pounds of water weight on him (mainly on his legs and lower abdomen). Also, when he was in Plano Presby 3 1/2 weeks ago, his resting heart rate was in the 140's. It is now in the 120's. These could be signs that the tumor is softening or getting smaller, which is relieving pressure on his lungs and blood vessels.
Also, he's started asking for food again. We usually have to force him to eat, but lately he's been asking for food several times a day. Granted, they are small meals (only about 6-12 bites at each sitting), but still progress. He's been more talkative and wants to get out of the house every day - even if it is just going to Target. Connor will need blood tomorrow based on the blood test he did today, but his white count is continuing to rise. The normal range for your white count is roughly 5,000-12,000. Connor's was holding at 24,000 for the last month and now it is 30,000. The immunotherapy is definitely stimulating his white count. We are praising God for the little things.
Thank you so much for the prayers! Nicole hosted Connor's prayer meeting today and about twenty friends (and new faces) came to pray for Connor. We are so touched and humbled by the outpouring of love from all of you.
Continue the prayer requests.
1. Continue to pray for the swelling to decrease
2. Tumor to shrink
3. Breathing to continue to get better
4. Appetite to increase
5. Restful, uninterrupted sleep
6. back pain to ease
The past two months have been especially trying on Connor and our family. Often, we struggle for the strength to just continue through another day. At times such as these, we turn to the one true source of hope, strength and peace - our God! This devotional from from Sarah Young in her book "Jesus Calling" is such a beautiful reminder of clinging to Him in the daily struggles in life.
"Rest with me a while. You have journeyed up a steep, rugged path in recent days. The way ahead is shrouded in uncertainty. Look neither behind you nor before you. Instead, focus your attention on Me, your constant Companion. Trust that I will equip you fully for whatever awaits you on your journey.
I designed time to be a protection for you. You couldn't bear to see all your life at once. Though I am unlimited by time, it is in the present moment that I meet you. Refresh yourself in My company, breathing deep draughts of My Presence. The highest level of trust is to enjoy Me moment by moment. I am with you, watching over you wherever you go."
Still believing,
JOY
Saturday, June 27, 2009 5:12 PM CDT
On Monday, I had a conversation with Dr. Rodriguez. I told him that it was so hard on Connor to be in Guatemala, away from his family and friends. I was also concerned about what we would do if we needed other medical care there. After a short conversation, he offered to make his medicine in pill form so we could take it home with us and Connor could finish the treatment here. He has done this in a few other cases. What a blessing. What a wonderful gift from God. We picked up the pills Tuesday and flew home on Wednesday. It is so good to be home and we are getting used to being home around all the other kids. Solitude has been replaced with sweet chaos.
Connor is so happy to be home. He's had his friend, Sayers, over to play video games and we're going to play wii at his house tonight. He also got to see the Transformer movie. We have some fun lined up for him this week at home. I can tell his spirits are lifted. The only problem is that he gets bored. His body limits him from doing the fun activities his mind wants to do.
Please continue your prayers...
1. tumor shrinkage
2. swelling to reduce
(He has started getting rid of the water by sweating it out. Will it reduce the swelling or is it just the body's way of getting rid of water when it cannot hold anymore in. I'm praying that it will start reducing the swelling.)
3. breathing to get better
4. back pain to get better
5. appetite to get better - it's holding steady
I love this devotional from Frances J. Roberts
My Healing Power
O My child, take My hand and I will lead you ot of the valley. Darkness abd shadows are behind you, but light and sunshine are ahead; for I shall bring you into new life and give health as you have never had it before. I will give vigor and radiant joy. Did I not promise to give "abundant life"? You shall forget the days of illness in the joy of victory; for I not only give you a wonderful victory but I, your Lord and Saviour, shall Myself become your victory. I have defeated already the foe that wars against you, and My personal experience of triumph I share with you, and we shall rejoice together, for you are My favored child.
Be not afraid with any fear. My love surrounds you, and My power preserves and protects you. Lean on Me and trust Me wholly. You will find Me strong and faithful, and wil be lifted into My arms of unfathomable peace.
I will give you the strength to witness to others of My healing power. You shall be a messenger of hope to those who despair, and you shall bear a word of faith to those who doubt. Your life shall be in My hand, for I have delivered you from destruction and have bound you to My heart in a covenenat of holy love. My Spirit shall be upon you, and My blessing go with you wherever you go.
You shall know joy such as the world can never give. There is a rest and a joy which I have reserved for those who listen to My voice and follow in obedience. My way is not difficult; it is blessed. It will not be lonely, for I will be wonderfully near. It is a life of joy, and this joy shall truly be your source of energy, your strength and your health."
This is my prayer.
Joy Cruse
Saturday, June 27, 2009 5:12 PM CDT
On Monday, I had a conversation with Dr. Rodriguez. I told him that it was so hard on Connor to be in Guatemala, away from his family and friends. I was also concerned about what we would do if we needed other medical care there. After a short conversation, he offered to make his medicine in pill form so we could take it home with us and Connor could finish the treatment here. What a blessing. What a wonderful gift from God. We picked up the pills Tuesday and flew home on Wednesday. It is so good to be home and we are getting used to being home around all the kids.
Connor is so happy to be home. He's had his friend, Sayers, over to play video games and we're going to play wii at his house tonight. We have some fun lined up for him this week at home. I can tell his spirits are lifted. The only problem is that he gets bored. His body limits him from doing the fun activities his mind wants to do.
Please continue your prayers...
1. tumor shrinkage
2. swelling to reduce
(He has started getting rid of the water by sweating it out. Will it reduce the swelling or is it just the body's way of getting rid of water when it cannot hold anymore in. I'm praying that it will start reducing the swelling.)
3. breathing to get better
4. back pain to get better
5. appetite to get better - it's holding steady
I love this devotional from Frances J. Roberts
My Healing Power
O My child, take My hand and i will lead you ot of the valley. Darkness abd shadows are behind you, but light and sunshine are ahead; for I shall bring you into new life and give health as you have never had it before. I will gibe vigor and radiant joy. Did I not promise to give "abundant life"? You shall forget the days of illness in the joy of victory; for I not only give you a wonderful victory but I, your Lord ans Saviour, shall Myself become your victory. I have defeated already the foe that wars against you, and My personal experience of triumph I share with you, and we shall rejoice together, for you are My favored child.
Be not afraid with any fear. My love surrounds you, and My power preserves and protecxts you. My love is perfect, and it is a love that perfecxts and destroys all fear. Lean on Me and trust Me wholly. You will find Me strong and faithful, and wil be lifted into My arms of unfathomable peace.
I will give you the strength to witness to others of My healing power. You shall be a messenger of hope to those who despair, and you shall bear a word of faith to those who doubt. Your life shall be in My hand, for I have delivered you from destruction and have bound you to My heart in a covenenat of holy love. My Spirit shall be upon you, and My blessing go with you wherever you go.
You shall know joy such as the world can never give. There is a rest and a joy which I have reserved for those who listen to Mh voice and follow in obedience. My way is not difficult; it is blessed. It will not be lonely, for I will be wonderfully near. It is a life of joy, and this joy shall truly be your source of energy, your strength and your health."
This is my prayer.
Joy Cruse
Tuesday, June 16, 2009 8:04 PM CDT
Thanks for all your prayers this week. Connor´s wheezing is gone. He´s breathing better, but still likes the oxygen at night. There are more signs that the medicine is working, but still not any discernable schrinkage. He still has the swelling, too. Now that the wheezing is gone, I´m just waiting for God to remove another symptom. Please continue to pray for shrinkage of the tumor and the symptoms to be gone.
Connor´s bloodwork was checked today and his bloodwork looked better - not dehydrated, his albumin is coming up, as is his platelets. Kidney and liver functions are still fine. White count is very high due to the medicine stimulating his immune system. Go immune system, go!!!!
I wanted to share this devotional from Frances J. Roberts from her book ¨"On the Highroad of Surrender." It is beautiful and so pertinent to our situation.
"Be not weary in well dong. It is your Father´s good pleasure to give you the kingdom. (Luke 12:32) Do not be disheartened if it seems to be delayed in coming. Lo, He is not slack concerning His promises, as some men count slackness. His times are not your times, and His patience endures forever. He can wait and not be anxious. While you see delay, He sees His will being performed in ways not discernable to your eye. What you see as standing still, He sees unfolding. It is like the rose that opens, but the motion is imperceptible to the human eye.
Rest in Him. He is surely bringing to pass His perfect will in and through the entire situation, and it is doing a unique work in many different lives, as they are touched and affected by the action.
Be still and wait. You shall know that the Lord your God, He it is who fights for you, and He will do a miracle before your eyes if you will but trust Him completely and cease to be anxious. What others are doing is as nothing compared to what He is doing and is GOING to do.}
REJOICE! Let this be a day of gladness and of jubilation, for our God is mighty, and His hand is working a victory!"
Psalm 31:15-24
Please continue to pray for our friends, Cody Novak, Caden Ledbetter and Carson Richardson as they continue to fight their own battles against cancer.
Still believing,
Joy Cruse
Sunday, June 14, 2009 3:16 PM CDT
Tait and I have had a good week with Connor. Connor has been coughing up a lot of phlegm so his wheezing is much better. Breathing a little easier too. He still has the swelling. He continues to have the burning/itching sensation on the tumor - side effects of the medicine, which is a sign it is working. Praise God for that. We continue to wait for the shrinking.
Thanks everyone for all your prayers. We have been covered in God's peace and grace all week. I know that all of you have been faithful prayer warriors for Connor, so I want to ask for a concentrated effort on Sunday and Monday. I know that some of you have already done this. Deb Blevons with Northwestern Mutual has asked several of you to pray on an hourly schedule on Sunday, Debby Parker has asked some to pray at 7am everyday and Nicole Arenas has set up a prayer meeting for Connor every other week. WE are blessed by all your prayers.
I found this story of King Hezekiah in II Chronicles 20. It is a great example of corporate prayer. When the King found out a huge enemy was coming against him, he asked all the people to fast and pray in order to defeat the enemy. The King said, "We have no power against this great multitude that is coming against us; nor do we know what to do, but our eyes are upon the Lord."
The prophet Jehaziel then spoke the words of the Lord. "You will not need to fight this battle. Position yourselves, stand still and see the salvation of the Lord, who is with you. Do not fear or be dismayed." He told them to stand still and sing His praises. (That was his strategy for fighting the enemy.) The King appointed those who should sing to the Lord and those who should praise His beauty and holiness. They went out before the army saying " Praise the Lord, for his mercy endures forever." The Lord delivered them from their enemy.
This week, please pray for Connor and sing God's praises. Thank Him for His mercy, grace, provision, strength and peace that He has provided us during this trial. Like King Hezekiah and the people of Israel witnessed, may God also deliver Connor from his enemy, cancer.
Thanks for your combined efforts in prayer this week.
Always believing,
Joy
Sunday, June 14, 2009 2:34 PM CDT
Tait and I have had a good week with Connor. Connor has been coughing up a lot of phlegm so his wheezing is much better. Breathing a little easier too. He still has the swelling. He continues to have the burning/itching sensation on the tumor - side effects of the medicine, which is a sign it is working. Praise God for that. We continue to wait for the shrinking.
Thanks everyone for all your prayers. We have been covered in God's peace and grace all week. I know that all of you have been faithful prayer warriors for Connor, so I want to ask for a concentrated effort on Sunday and Monday. Some of you have already done this. Deb Blevons with Northwestern Mutual has asked several of you to pray on an hourly schedule on Sunday, Debby Parker has asked some to pray at 7 am every morning, and Nicole Arenas has set up a prayer meeting for Connor every other week. We are so thankful for your efforts.
I found this story of King Hezekiah in II Chronicles 20. It is a great example of corporate prayer When the King found out a huge enemy was coming against him, he asked all the people to fast and pray in order to defeat the enemy. King Hezekiah said, "We have no power against this great multitude that is coming against us; nor do we know what to do, but our eyes are upon the Lord."
The prophet Jehaziel then spoke the words of the Lord. "You will not need to fight this battle. Position yourselves, stand still and see the salvation of the Lord, who is with you. Do not fear or be dismayed." He told them to stand still and sing His praises. The King appointed those who should sing to the Lord and those who should praise His beauty and holiness. They went out before the army saying " praise the Lord, for his mercy endures forever." The Lord delivered them from their enemy.
This week, please pray for Connor and sing God's praises. Thank Him for His mercy, grace, provision, strength and peace that He has provided us during this trial. Like King Hezekiah and the people in Israel witnessed, may God also deliver Connor from his enemy, cancer.
Thanks for your combined efforts.
Always believing,
Joy
Thursday, June 11, 2009 10:54 PM CDT
We made it safely back on the airplane Monday. Treatments have started again. Connor is hanging tough.
We are battling a couple new symptoms now, so we want to add them to our prayer requests. The tumor has been pressing on Connor´s diaghram for awhile now and it is making his oxygen levels a little lower than normal beacause his lungs are compressed. We have put him on oxygen at night - just a low amount blowing on his face. WE were concerned about how we would get that here, but God is good. No need to worry. Our new friend, Dominique, has contacts all over this town. She hooked us up with the fire dept on a temporary basis and they deliver oxygen to our room every day for free until we can get something permanent situated (most likely tomorrow). Can you believe it? In fact, Sebastian, the fireman (trained in Dallas) who delivers the oxygen just brought Connor his oxygen for tonight. PLEASE PRAY FOR HIS OXYGEN LEVELS TO RISE.
Also, Connor had a cold last week and because he lays down all the time, he's wheezing now. He can´t cough it all up. Dominique set us up an appt with a local doctor today. He was amazing. He brought us into his office as soon as we arrived. He told us it was a blessing to him to be able to help us. He gave us a prescription for a nebulizer and albuterol to get rid of the wheezing. PLEASE PRAY FOR THE WHEEZING TO GO AWAY. We told him we need to be able to check his blood counts regularly in case he needs another blood transfusion. He said someone could come to our hotel to draw Connor´s blood. Wow! That´s service. He prayed for Connor in his office and told us that he believed in miracles - (because that is what it is going to take). He said he is honored to be on our team to help Connor and the captain of the team is Jesus. Tait and I were blown away.
The compression of the tumor is causing his legs to retain water a little bit. What this means is that we are in a race against time. Dr. Rodriguez is seeing signs that the medicine is starting to work. The composition of the outside of the tumor sticking out is getting soft. If the outside starts to change, that means it is starting to work on the inside. We need this medicine to start shrinking the tumor as soon as possible. Our race is can we keep Connor well (manage all these symptoms) long enough for the medicine to wage its war on the cancer and shrink the tumors, which will start eliminating these symptoms one by one. He is still having back pain when he walks and sits up. It is excruciating for Tait and I to watch him in this kind of pain. The tumors shrinking will relieve this pain, also. We are still believing that God will provide for Connor what he needs in His perfect timing (NOW, ACCORDING TO ME).
I´m claiming the verse Psalm 118:17 for Connor. "I will not die, but live and declare the works of the Lord." Please pray this verse over Connor as you faithfully pray for him.
I also wanted to thank everyone who participated in the III Forks Golf Classic and Auction/Dinner benefiting TeamConnor. It was a wonderful event and we so appreciated everyone´s support. The memories from your support Sunday night have helped carry us this week.
Always believing,
Joy Cruse
Wednesday, June 10, 2009 8:34 PM CDT
We made it safely back on the airplane Monday. Treatments have started again. Connor is hanging tough.
We are battling a couple new symptoms now, so we want to add them to our prayer requests. The tumor has been pressing on Connor´s diaghram for awhile now and it is making his oxygen levels a little lower than normal beacause his lungs are compressed. We have put him on oxygen at night - just a low amount blowing on his face. WE were concerned about how we would get that here, but God is good. No need to worry. Our new friend, Dominique, has contacts all over this town. She hooked us up with the fire dept on a temporary basis and they deliver oxygen to our room every day for free until we can get something permanent situated (most likely tomorrow). Can you believe it? In fact, Sebastian, the fireman (trained in Dallas) who delivers the oxygen just brought Connor his oxygen for tonight. PLEASE PRAY FOR HIS OXYGEN LEVELS TO RISE.
Also, Connor had a cold last week and because he lays down all the time, he's wheezing now. He can´t cough it all up. Dominique set us up an appt with a local doctor today. He was amazing. He brought us into his office as soon as we arrived. He told us it was a blessing to him to be able to help us. He gave us a prescription for a nebulizer and albuterol to get rid of the wheezing. PLEASE PRAY FOR THE WHEEZING TO GO AWAY. We told him we need to be able to check his blood counts regularly in case he needs another blood transfusion. He said someone could come to our hotel to draw Connor´s blood. Wow! That´s service. He prayed for Connor in his office and told us that he believed in miracles - (because that is what it is going to take). He said he is honored to be on our team to help Connor and the captain of the team is Jesus. Tait and I were blown away.
The compression of the tumor is causing his legs to retain water a little bit. What this means is that we are in a race against time. Dr. Rodriguez is seeing signs that the medicine is starting to work. The composition of the outside of the tumor sticking out is getting soft. If the outside starts to change, that means it is starting to work on the inside. We need this medicine to start shrinking the tumor as soon as possible. Our race is can we keep Connor well (manage all these symptoms) long enough for the medicine to wage its war on the cancer and shrink the tumors, which will start eliminating these symptoms one by one. He is still having back pain when he walks and sits up. It is excruciating for Tait and I to watch him in this kind of pain. The tumors shrinking will relieve this pain, also. We are still believing that God will provide for Connor what he needs in His perfect timing (NOW, ACCORDING TO ME).
I´m claiming the verse Psalm 118:17 for Connor. "I will not die, but live and declare the works of the Lord." Please pray this verse over Connor as you faithfully pray for him.
I also wanted to thank everyone who participated in the III Forks Golf Classic and Auction/Dinner benefiting TeamConnor. It was a wonderful event and we so appreciated everyone´s support. The memories from your support Sunday night have helped carry us this week.
Always believing,
Joy Cruse
Sunday, June 7, 2009 4:39 PM CDT
We just got home from the hospital. Connor is resting comfortably and he's going to see the movie "Up" tonight. He's been waiting to see it for awhile and we promised him he could see it while we're here.
The albumin level didn't come up very much. I guess the cancer is just eating it up like candy. The lasiks did help him urinate some, but not as much as expected. His abdomen didn't come down much. We did a sonogram to see if they could drain the liquid with a needle and it showed that most of the liquid is gone now. His extended abdomen is pretty much all tumor now. Heading back to Guatemala on Monday to see if we can get this thing to shrink. PLEASE KEEP PRAYING FOR A RED SEA MIRACLE. Thanks for your prayers.
Here's a song that my friend, Heather Hawkins, sent me. I'm not sure who the singer is.
I'm down on my knees again tonight,
I'm hoppin' this prayer will turn out right.
See, there is a boy that needs Your help.
I've done all that I can do myself
His mother is tired,
I'm sure You can understand.
Each night as he sleeps
She goes in to hold his hand,
And she tries
Not to cry
As the tears fill her eyes.
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he's not just anyone, he's my son.
Sometimes late at night I watch him sleep,
I dream of the boy he'd like to be.
I try to be strong and see him through,
But God, who he needs right now is You.
Let him grow old,
Live life without this fear.
What would I be
Living without him here?
He's so tired,
And he's scared
Let him know that You're there.
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he's not just anyone, he's my son.
Can You hear me?
Can You see him?
Please don't leave him,
He's my son.
Always Believing,
Joy Cruse
Saturday, June 6, 2009 11:38 AM CDT
I'm sending out a quick update because we need some prayers. After we got home yesterday, events unfolded and we realized that Connor's albumin was low and he was leaking fluid into the abdominal area. (If you remember, this was what we suspected was wrong when we went to the ER 2 1/2 weeks ago.) He's currently at Plano Presbyterian. He received some albumin last night and that will hopefully fix that problem. He's receiving some blood. His red count is low. After that, he will get some lasiks (diuretic) to help him urinate all this fluid out of him. This should decrease the size of his belly, which should then relieve the pain in his back. WE are praying and believing that this will be the answer to our prayers that Connor would be able to sit up and walk without back pain. PLEASE PRAY FAITHFULLY FOR THIS.
Also, his red blood count and platelets have lowered over the last two weeks. This is concerning, but I have to believe that it is because of his sluggish bone marrow. He currently has an infection (yet to be determined) and that has caused his white count to be very high to fight the infection. After his bone marrow transplants, his bone marrow is sluggish and when it really works hard to produce one line of cells, the other two cell lines drop. This happened when he was having the bleeding ulcer. His bone marrow was creating 3X the normal amount of baby red blood cells to compensate for his low red blood count. At the time, his platelets and white counts were decreasing steadily. PLEASE PRAY THAT IS THE CASE THIS TIME - THAT AS SOON AS THE INFECTION IS CLEARED, HIS COUNTS WILL NORMALIZE.
It is so hard at times like these to remain steadfast in our beliefs. Satan wants us to believe that he is winning, but I have to believe that God will redeem this situation. He is simply answering our prayers to make his abdominal area smaller and his back pain to go away. He will rid Connor of this infection and then his counts will stabilize. I am thankful the He will answer our prayers, like this devotional from Sarah Young says:
"When you bring Me prayer requests, lay out your concerns before Me. Speak to Me candidly; pour out your heart. Then thank Me for the answers that I have set into motion long before you can discern results. When your requests come to mind again continue to thank Me for the answers that are on the way. If you keep on stating your concerns to Me, you will live in a state of tension. When you thank Me for how I am answering your prayers, your mind-set becomes much more positive. Thankful prayers keep your focus on My Presence and My promises."
Please pray...
1. The albumin and lasiks will decrease the fluid retention and alleviate the pain in Connor's back.
2. The antibiotics will kill the infection
3. His blood counts will stabilize when the infections is gone
4. That he will be able to come home tonight.
Thank you for answering our prayers, Heavenly Father.
Always Believing,
Joy Cruse
Wednesday, June 3, 2009 11:35 PM CDT
We are in the middle of the second week of treatment. Everything is still going smoothly. It is unbelievable how easily everything has gone here. I know that God has gone before us to pave the way. This gives me more assurance we are in the right place.
With the help of our new friends, Marg and Dminique, we have found a more permanent place to stay here in the hotel district. It is a hotel with apartments and is much better suited for a long stay; and much cheaper. We have been given the names of many contacts here, so that we now have lots of help when we need it. Thanks to Ron and Margie Caruthers for helping me run errands and go grocery shopping. Thanks to our Sunday School class for donating a lot of airmiles to us. Also, thanks to Jim and Kristen Brull, for donating and organizing the airline tickets. Because of their kindness, Connor and I have airline tickets here for our travels through fourth of July weekend and Carson and MacKenzie will be able to visit us in June. Many friends and family have offered to come stay with us, so we will have company through the end of July. Also, our school, Prestonwood Christian Academy and Legacy Christian Academy have rasied money for Connor by collecting Coins for Connor. It is quite a substantial amount. Thanks for putting it together, Kristen Brull and Elizabeth Collins. Also, thanks for starting the first one at your school in Houston, Cody Reeter. We were also presented by the PCA 1st and 2nd grade classes a gift certificate tree with tons of certificates to restaurants. This should feed my family back home for quite awhile. We can never thank you all enough. WE so appreciate the love and care from all of you. WE are humbled by this and the prayers of so many. Because of you, we know that we are not fighting this battle alone.
Connor continues to hold steady. He's not sleeping during the day anymore and he only needs pain medication twice a day (it was three times a day), so we are seeing improvements there. The tumor (bump) that is sticking out of his abdomen is a 1/2 inch smaller. Most patients don't see any improvements until after two weeks, so we are praising God for these little improvements. The abdominal area is the same, and that is what is putting pressure on his back and causing him discomfort. OUR PRAYER REQUEST WOULD BE FOR THE ABDOMINAL AREA TO SHRINK TO ALLEVIATE HIS DISCOMFORT AND BACK PAIN. He has some knots in his back, so we are going to try to get him a massage to see if that will help him. I have been massaging his back and that has helped with the pain momentarily. WE ARE PRAYING THAT HE WILL FEEL BETTER FOR OUR FLIGHT HOME THIS WEEKEND. He is so looking forward to coming home. PLEASE PRAY THAT HIS APPETITE CONTINUES TO IMPROVE. It is better, but he has a long way to go. He's getting so thin. Thank you so much for your prayers. They are greatly needed.
WE pray that God will bless you and your families for being such a blessing to us. I believe that God will pour out blessings to those who help and pray for others. For example, the woman who manages the hotel told me this story this morning. Last week, she decided to give our family a great deal on renting an apartment here because she felt so moved by our story. Her co-worker told her that the money she is losing in this transaction doesn't matter, that God would bless her decision to help us. Last week, the hotel was 1/2 full. The day we checked in, they became fully occupied. They truly believe God has blessed them for helping us. We pray for those same blessings on your families.
"Is it not to share your food with the hungry and to provide the poor wanderer with shelter - when you see the naked, to clothe him and not to turn away from your own flesh and blood? Then your light will break forth like the dawn, and your HEALING will quickly appear; then your righteousness will go before you, and the glory of the Lord will be your rear guard. Then you will call, and the Lord will answer, you will cry for help and he will say "Here I am." Isaiah 58: 6-9
Always believing,
Joy
Saturday, May 30, 2009 10:05 PM CDT
I wanted to update everyone on our progress with the new treatment and new doctor. The treatment is immunotherapy and he takes it orally and by feeding tube. We are receiving daily confirmations that this is where we are supposed to be. First of all, everything is going smoothly (except for Tait
having to do the laundry at home!).
The first day we arrived we met several of the patients. When we went in to meet the doctor, all the patients in the waiting room stood in a circle and prayed for Connor. The doctor is praying for Connor. What a place of faith. It is exactly where we need to be.
How refreshing compared to words of imminent disaster that I normally hear from doctors. The doctor is not making big promises. He just says to pray that God will make this work. I told him we are and thousands of others are, too.
The second day, a woman got the great news that she was now free of breast cancer. As she made her announcement, the patients gathered around her and bowed their heads - giving thanks to the One who deserves the credit for healing her.
We felt like God was letting us be witness to a miracle. I cried along with the rest of the room, though I didn't even know her. That experience was another confirmation.
After Connor finished his first treatment on Tuesday, he walked out of the doctor's office into the waiting room to the noise of applause and cheers. All the patients were cheering for him (and they do it every day now). What beautiful noise to my ears, though Connor isn't sure if he likes it.
After Connor's first dose, we noticed small changes. Lately, he has been moaning and very restless in his sleep. He normally can't get comfortable for very long. So the first
thing we noticed was that he slept peacefully. The last two nights, we have all slept so well. Connor has not been eating either. We force him to eat a few bites at night. Today he wanted lunch and he said he was hungry after we left the doctor's office. Lately, he's wanted to lay around and
sleep most of the day. He's also been more alert each day. He's awake most of the day now and he's reading, playing his Nintendo DS and watching movies. All are improvements, so we are thanking God for any little things.
Thanks for all your prayers. We feel the presence of God here strongly, so we know He is answering your prayers. Please pray that Connor will be much more comfortable before we fly home next Friday.
"I have set the Lord continually before me; because He is at my right hand, I will not be shaken." Psalm 16:8.
Always believing,
Joy
Sent from my iPhone
Saturday, May 23, 2009 3:59 PM CDT
These words from Matt Redman's song "You Never Let Go" sum up how I've feeling about this next part of our adventure.
Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I’m caught in the middle of the storms of this life
I won’t turn back
I know You are near
And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?
Chorus:
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me
And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We’ll live to know You here on the earth
Chorus:
Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You
I now know what the Bible means when it says that God gives us "a peace that passes all understanding." WE feel totally at peace with this new direction. Feelings of expectancy and joy are filling me as I look forward to what God is going to do. I can't explain it. When we gave our testimony last week, I mentioned that there is this "sweet spot" that I yearn for... where no fear/doubt can penetrate. You are so focused on the things eternal that what you see with your eyes doesn't compare to the knowledge of God's presence. Just knowing that He will "never let go" fills me with hope and peace. I pray that God will keep Connor and my family in this "sweet spot" as we continue on our journey.
Thanks for the prayers, love and support from everyone. Keep the prayers coming.
Always believing,
JOY
Thursday, May 21, 2009 1:14 PM CDT
Connor was experiencing pain in his back and his abdomen was pretty extended/bloated. We ended up at Children's Med Ctr last night. After bloodwork and a CT scan was done, we know the cause of his discomfort. His pancreas and liver enzymes are good, so we know that his organs are functioning well. Praise God! The CT scan showed that the tumor has grown and that is what is pushing out on his abdominal wall. That is giving him the discomfort. The blessing is that it is not pushing on any organs. Praise God - what a miracle (one of our specific prayer requests). The bad news is that the tumor is approaching some important blood vessels like the Vena Cava. PLEASE PRAY THAT GOD WILL CONTINUE TO PROTECT CONNOR'S BLOOD SUPPLY AND HIS ORGANS. ALSO, PRAY THAT GOD WOULD TAKE HIS PAIN AWAY, MAKE HIM COMFORTABLE.
We are headed to Dr. Rodriguez' clinic and will start treatment there on Monday. We are swinging for the fence. It's the ninth inning and we are putting in the pinch hitter, so to speak. There have been many miracles there and he is a Godly man, who gives all credit of the healing miracles to God. I like a man who gives credit where credit is due. WE feel a peace that this is where God is leading us. If we are in His Will, we know He will surround us with his love and He will not leave us.
Tait and I know that Connor's destiny will soon be revealed. No more waiting to see God's hand. No more God working behind the scenes. We will see His plans for Connor come to fruition soon. His healing is on the way - whether it is healing on earth or in Heaven, my son will not be suffering much longer. That being said, I still believe that He will be healed here on earth. I believe God has a special plan and purpose to be worked out through his life here on earth. What a story he will live to tell.
PLEASE CONTINUE TO PRAY FOR OUR SAFETY IN OUR TRAVELS. PRAY FOR MY OTHER CHILDREN WHO WILL BE WITHOUT THEIR MOTHER FOR AWHILE. PRAY FOR CONNOR'S HEALING ON EARTH AND FOR GOD'S PURPOSE TO WORKED OUT THRU HIS LIFE.
"I have to believe" by Rita Springer
I have to believe
That He sees my darkness
I have to believe
He knows my pain
I have to lift up
My hands to worship
Worship His name
I have to declare
That He is my refuge
I have to deny
That I am alone
I have to lift up
My eyes to the mountain
It's where my help comes from
Oh yeah
He said that He's forever faithful
He said that He's forever true
He said that He can move mountains
If He can move mountains
He can move my mountain
He can move your mountain, too
Oh, I have to stand tall
When the wind blows me over
I have to stand strong
When I'm weak and afraid
I have to grab hold
Ahold of the garments
The garments of praise
I know, I know, I know
Cause He said that He's forever faithful
And He said that He's forever true
He said that He can move mountains
If He can move mountains
He can move my mountain
He can move your mountain, too
I have to sing praise
When the hour is midnight
He unlocks these chains
That bind up my soul
My sin and my shame
He has forgiven and made me whole
I have to believe
He's got everything under control
I have to believe
Lord, I believe
Help my unbelief
I have to believe in You
I have to believe
Tuesday, May 19, 2009 4:44 PM CDT
Last Friday was May 15th and Connor's 4th anniversary of fighting cancer. We are grateful to God that he is still hear fighting! Celebrate with us and say a prayer of Thanksgiving for his life.
This week, Tait and I need to make a decision as to where we will go next for Connor's treatment. The choice has been narrowed down to two options... Dr. Rodriguez or Dr. Burzynski. All the other options are either not available right now or are not available for Connor period. We have to believe that is just God shutting the doors on those treatments. So, again, we come to you to ASK FOR YOUR PRAYERS FOR GUIDANCE. Connor has been very tired the last few days and he's been having some back pain????? WE feel the need for urgency. I think the next step will be crucial.
The treatments in the past have proven to be like a little dog yapping at the heels of this cancer. It is annoying, but not really making any impact. It's time to "aim for the fence" as they say in baseball. We know that God can use any instrument/method to heal Connor. He can heal him right now. The reason we are placing so much importance on this decision is because we want to follow His direction, be under the umbrella of His will for Connor's life. Thanks for your continued prayers.
Also, thanks for your prayers for our testimony last weekend. It went very well. The families there were just wonderful. They were so receptive, welcoming and they had such a sweet spirit. They showered Connor with so many gifts. The boys thought it was Christmas in May! WE are so grateful to Lake Pointe's Men's Ministry for giving us the opportunity to give our testimony. We felt so blessed. We are so glad we could share what God has done in our lives. In the midst of all that we have gone through over the last four years, we still stand firm and say that God has never left our side (even when we have problems hearing from Him). This song "Always" by Building 429 shares the same thoughts.
I was standing in the pouring rain one dark November night
Fighting off the bitter cold when she caught my eye
Her face was taught and her eyes were filled, and to my surprise
She pulled out a photograph and my heart just stopped inside
She said, “He would’ve been three today
I miss his smile, I miss his face”
What was I supposed to say, but
CHORUS
I believe always, always
Our Savior never fails
Even when all hope is gone
God knows our pain and his promise remains
He will be with you always
He was living in a broken world, dreaming of a home
His heart was barely keeping pace when I found him all alone
Remembering the way he felt when his daddy said goodbye
Fighting just to keep the tears and the anger locked inside
He’s barely holding onto faith
But deliverance is on its way, cause
CHORUS
I believe always, always
Our Savior never fails
Even when all hope is gone
God knows our pain and his promise remains
He will be with you always
Friend, I don’t know where you are and I don’t know where you’ve been
Maybe you’re fighting for your life or just about to throw the towel in
But if you’re crying out for mercy, if there’s no hope left at all
If you’ve given everything you’ve got and you’re still about to fall
Well hold on, hold on, hold on, cause
I believe always, always
Our savior never fails
Even when all faith is gone
God knows our pain and his promise remains
Always, always, He will be with you always
Please continue to pray for Caden and Carson as they continue with their fight.
Always Believing,
Joy Cruse
Thursday, May 14, 2009 10:24 AM CDT
For the journal entry today, I am going to post a prayer for Connor that was written by my friend, Mary Kim Gray (another parent at our school, PCA). She so eloquently captures our needs. She is also referencing the great news about our friend, Cody Novak. After his surgery on Monday, he was pronounced "Cancer Free." Praise God!
Dear Heavenly Father,
We thank you for the great news about Cody. We are thankful for your deliverance for him. We ask and beseech you that you would provide the same supernatural deliverance to Connor. Thank you for increasing our faith and showing us again what you can do. We are frail, Lord, and need your continual reminders that you are an active, caring God who will go to any extreme to care for your children. We ask that you would bless Connor with a clean bill of health. We ask that you would intervene through the treatment and stop the cancer. We ask that you would continue to direct Joy and Tait as they look for treatment options. At the same time, we ask that Jesus Himself would touch Connor's body and restore him to perfect health on this earth. Please continue to protect his organs from the chemo--and his digestive system from the tumor. We ask once again for the tumor's total eradication.
Where Joy and Tait may be feeling frustration at not having an answer and knowing exactly what to do, we pray for you to give them supernatural peace. We pray for you to guide their encounters and their access to information. Please direct them, Lord, and let them know that you are leading them. Make this very clear to them, as you increase their faith in your provision of divine direction at exactly the right time. Give them quiet spirits and quiet moments in their busy days, so they can hear you speaking. Speak more loudly than usual, as they have a strong need for your guidance. Confirm their choices multiple times, so they will know that you are indeed leading them. Give them hope and strength in the midst of this battle that has been long and arduous. "Do not fear, for I am with you; Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, Surely I will uphold you with My righteous right hand." (Isaiah 41:10) Continue to uphold this precious family as they are strengthened by you.
I pray that the voice of the enemy would be silenced. I am sure that as Tait and Joy and Connor bring glory to you that Satan is determined to try to win some battles. I pray for resistance and enlightenment as to the devil's schemes. Silence his efforts to bring doubt--bind him from any work he is trying to do--and bring glory to yourself through the manner in which Tait, Joy, and Connor handle this trial. Please bring this trial to an end swiftly and let Connor live a long and fruitful life--always bringing glory to your name. Continue to give breath and life to his body on a day-by-day basis. Continue to call Connor in righteousness and help him to open blind eyes and free captives from their prisons as a result of his testimony of your goodness to him. "This is what God the LORD says—he who created the heavens and stretched them out, who spread out the earth and all that comes out of it, who gives breath to its people, and life to those who walk on it: 'I, the LORD, have called you in righteousness; I will take hold of your hand. I will keep you and will make you to be a covenant for the people and a light for the Gentiles, to open eyes that are blind, to free captives from prison and to release from the dungeon those who sit in darkness.'" (Isaiah 42: 5-7)
We ask this in the name of the One who has taken Connor's hand and is always walking with him,
Amen
We continue to look for the next step, as we believe God will provide a way. PLEASE PRAY FOR TAIT, CONNOR AND ME AS WE GIVE OUR TESTIMONY THIS SATURDAY MORNING AT LAKEPOINTE CHURCH IN ROCKWALL. Pray we will offer hope, strength and glory to God to those who listen. We are so excited about giving our testimony, because Revelations 12:11 says "They overcame him (Satan) by the blood of the Lamb and the words of their testimony." So, here we go. I'm ready for some "overcoming!"
For those of you who love to golf and live in the Dallas metroplex, have I got a golf tournament for you! The III Forks Golf Classic is benefiting TeamConnor this year. The dinner/auction is at III Forks Sunday evening, June 7th and the golf tournament is Monday, June 8 at Gleneagles Country Club. For more details, click on www.teamconnor.org. Connor hopes to see you there.
Please continue to pray for our friends, Carson and Caden. They are searching for their next step, too, as their battle is getting more difficult.
Always believing,
Joy Cruse
Tuesday, May 5, 2009 5:11 PM CDT
We are still wading in murky signs and directions. No blinking lights or arrows pointing us in a direction. We were really hoping God would give us some blatant direction this week.
Still waiting on the NY surgeon to review the CT scan. Don't know anything there. We really felt God was leading us to San Francisco and a vaccine therapy there. A couple hours ago, I finally spoke with the doctor there. He can supply this vaccine on a compassionate use basis, but the problem is getting a children's facility to administer it. They have already started the process with a hospital in Cincinnati for a pediatric clinical trial of this vaccine. If the hospital would agree to do this on a compassionate us basis for Connor, this would be the speediest solution (but could still take months). So, still searching for something more immediate. We continue to look into many other avenues.
At this point, he is scheduled to do another round (3 weeks) of cetuximab with the chemo. Not real crazy about the chemo part of it. I was really hoping we would have another plan in place by now, so we could forego the chemo. Still praying for that. As you can see, we still need prayers for guidance.
On a lighter note, we have some praises from yesterday. When we got the results of Connor's blood count, his white count was well in the normal range. Yeah, immune system. Glad to know that is working well. Also, he gained 2 pounds and he didn't get a stomach ache after eating his lunch yesterday. Probably the most fun event for him was when he got the game ball at his baseball game. He hit the last runner into home, giving his team the winning point. He was so proud!
Please continue to pray for
1. healing/protect his organs
2. weight gain
3. direction
4. strength/peace
5. give Glory to God
Here's a nice quote from Oswald Chambers about the Graciousness of Uncertainty. Thanks, Gwen Shaw.
"It doth not yet appear what we shall be." 1 John 3:2
Naturally, we are inclined to be so mathematical and calculating that we look upon uncertainty as a bad thing. We imagine that we have to reach some end, but that is not the nature of spiritual life. The nature of spiritual life is that we are certain in our uncertainty, consequently we do not make our nests anywhere. Common sense says - "Well, supposing I were in that condition . . ." We cannot suppose ourselves in any condition we have never been in. Certainty is the mark of the common-sense life: gracious uncertainty is the mark of the spiritual life. To be certain of God means that we are uncertain in all our ways, we do not know what a day may bring forth. This is generally said with a sigh of sadness, it should be rather an expression of breathless expectation. We are uncertain of the next step, but we are certain of God. Immediately we abandon to God, and do the duty that lies nearest, He packs our life with surprises all the time. Jesus said, "Except ye become as little children." Spiritual life is the life of a child. We are not uncertain of God, but uncertain of what He is going to do next. If we are only certain in our beliefs, we get dignified and severe and have the ban of finality about our views; but when we are rightly related to God, life is full of spontaneous, joyful uncertainty and expectancy.
"Believe also in Me," said Jesus, not - "Believe certain things about Me." Leave the whole thing to Him, it is gloriously uncertain how He will come in, but He will come. Remain loyal to Him.
Always Believing,
Joy Cruse
Tuesday, April 28, 2009 10:07 PM CDT
Last night, I gave Connor his last dose of chemo. We are looking forward to a great week this week. PLEASE PRAY THAT HE WILL FEEL GREAT - NO NAUSEA AND NO TIREDNESS. ALSO, PRAY HE WILL GAIN SOME WEIGHT. He is looking so frail. He had the stomach virus last week and lost a couple more pounds. Ugghh!
His skin is having some issues - dry and flaky, also a couple new spots on his legs. Hopefully, this is a sign that the medicine is working. The bump on his upper abdomen is not any smaller; it's possibly the same size, maybe bigger??? It's so hard to tell if this is working.
WE REALLY WANT TO ASK FOR YOUR PRAYERS FOR OUR GUIDANCE. WE don't know if we should continue on this route for another round or try something new. (We have about a week to figure this out). Everything we try is just guesswork. It is so frustrating and scary, and every decision feels like life or death. I know that God is watching over Connor and He has a plan for him. I just want to be in the loop, so to speak. There is so much pressure to hear correctly from Him. I am praying that God would open the right door and shut all the others.
Thanks for your prayers.
1. Great week of no nausea or tiredness for Connor
2. Gain weight and strength
3. Guidance for his treatment
4. Healing
5. Be a light to others
Here's a beautiful song by Shannon Wexelberg called "In the Waiting".
I’ve tried to be strong
Is there something I’ve done wrong?
‘Cause I’ve been waiting here so long.
You see each tear
As the months have turned to years.
For some reason You must want me here.
But I can see You’re breaking up my fallow ground
In this season of such barrenness,
Lord, I have found
(REFRAIN)
You are in the waiting
In that moment of my life
When my faith and hope collide.
While my heart’s anticipating
Just how and when You’ll move
That’s when you prove
You are in the waiting, too.
So plant Your seed
Till it’s living, Lord, in me.
Make me all You want me to be.
Unveil my eyes
If I’ve exchanged the truth for lies.
Give me faith so I can see
The work that you began
You will complete in me.
And I don’t have to understand the place You’re keeping me.
(BRIDGE)
You give me water in the desert.
You lift me up on eagles’ wings.
And from way up high
I can see my life
From Your view of things.
And though I’ve cried for an answer
I believe that I can say:
“Thank You, Lord, for every answer
You've delayed.
Thanks, Lynn Rudning for that song.
Always believing,
Joy
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'll 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 to 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.
Always believing, (Thanks, Ira)
Joy
Thursday, April 16, 2009 5:10 PM CDT
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 the outside, 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 EACH MEMBER OF THE FAMILY. (VERY INSIGHTFUL)
2. PRAY FOR RASH OR THIS DRUG TO WORK TO SHRINK THE TUMOR (OR AT LEAST STOP 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
Friday, April 10, 2009 10:02 AM CDT
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.
Monday, April 6, 2009 5:49 PM CDT
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 its
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 other 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 Novak 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 Armstrong, Scarlett Luce, Alix Sibley, myself and my niece,
Lexie. Also, the PCA team had Debby Parker, Dylan Parker (8 yrs old
classmate of Connor's), Missy Stogner, and Denise Thornton. Our
Sunday School team had Blair and Kelli Franklin, Chris and Shara Lott,
Elizabeth Collins (8 yr old friend of Connor's), Derry and Julia
Anderson. 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
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
Wednesday, March 25, 2009 3:02 PM CDT
Connor seems to be feeling better now, after the effects of the chemo have worn off. His blood counts look good, so he doesn't need any transfusions and he doesn't have to be kept at home because his white count is low. Praise God! He's not vomiting after meals, so the tumor must not be encroaching on the stomach. Praise God!
Please pray for
1. He has an infection around the outside of his feeding tube, possibly on the inside too. He's on antibiotics. Pray that this would heal quickly, it is sore and tender.
2. CT scan on Tuesday of next week. Please pray for good results.
3 The tumor to stop growing/shrink - make the visible part in his abdomen disappear.
4. Protect his organs, especially his stomach
5. Connor's strength and peace
6. We would be a light to others and be strong for Connor and our other kids
If you want to know where Tait and I stand in our faith, after this second "d-day" (d for diagnosis), this quote from Francis De Sales sums it up.
"Do not look forward to the changes and chances of this life in fear; rather look to them with full hope that, as they arise, God, whose you are, will deliver you out of them. He is your keeper. He has kept you hitherto. Do you but hold fast to His dear hand, and He will lead you safely through all things; and when you cannot stand, He will bear you in His arms."
Also, I wanted to thank my friends who are running for TeamConnor in the TXTough relay race this weekend. We have several teams running in the relay - most of them organized through Tait's office, Prestonwood and PCA. Thank you to my team captains, Chad Armstrong, Julie Armstrong, Debby Parker and Missy Stogner. I appreciate everyone working so hard on this. Please pray that Sunday will be a safe and joyous occasion for all of us runners.
Also, PCA is sponsoring a blood drive and bone marrow registry next Tuesday in Connor and Cody Novak's honor. Cody is a senior at PCA who was diagnosed with a soft tissue sarcoma (very similar to Connor's new tumor) a couple months ago. The school, as usual, has been so great to rally around Cody, as they've done for Connor for so long now. If you would like to stop by, the hours are from 10 -7 and PCA is at the intersection of Midway and Park in Plano. Please keep Cody in your prayers, too. He's a great kid with a great message for Christ! Please continue to pray Carson Richardson and Caden Ledbetter as they continue to fight their own battles against cancer.
Still believing,
Joy
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. Also, 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. The doctors warned us that if the tumor keeps growing it could cut off the connection between the stomach and the intestines. This could make eating by mouth not possible. All of his nutrition would be thru his feeding tube. Please pray that God would protect all of Connor's organs.
5. 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
Tuesday, March 10, 2009 2:50 PM CDT
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.
Tait
Wednesday, March 4, 2009 10:42 PM CST
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
~Meredith Andrews
Still Believing,
Joy Cruse
Tuesday, February 24, 2009 7:37 PM CST
When it rains, it pours. Please lift up Tait and his family as his father, Burt, passed away today. He had Alzheimers. He was suffering, so it is a blessing that he is not in pain anymore.
As for Connor, we're still in limbo, but we are making progress. After speaking with the doctors in Houston, they made me realize starting the treatment right now is a little tricky. If we start something right now, he would have to be off of the treatment for three weeks before he could start the protocol on a clinical trial. Also, the doctors were nervous about him starting treatment on Monday (yesterday) and having his blood counts bottom out while we are in Hawaii. We've reached a compromise, so to speak. If they can find a trial for Connor and have it ready to go on Thursday when he gets back, then we will hold off on any drugs until then. If they have nothing concrete planned, we will start treatment on Friday. Friday's treatment would be a combination of oral chemo and a drug that is iv fluid that he will receive once a week. Connor will be back in Dallas before his counts bottom out (usually 7-10 after the chemo starts). The doctors are looking at 2 different trials right now. We also have the Chief Medical Officer at St. Jude's looking at Connor's medial records to see if he has anything new to offer there (Thanks, Denese). And finally, we have a Dr. Bloom in Chicago (referral from Steve Braun) looking out for clinical trials and helping us get some of the promising drugs out there in trials that are closed or trials that Connor doesn't qualify for. Dr. Bloom works for an organization that funds clinical trials and helps people who find themselves shut out of trials for one reason or another. PLEASE PRAY FOR GOD'S GUIDANCE -THAT WE WILL CHOOSE THE RIGHT PATH FOR CONNOR, WHETHER IT BE THE CLINICAL TRIAL OR THIS OTHER TREATMENT THAT WE CAN START FRIDAY OR SOMETHING THAT DR. BLOOM FINDS.
"I am the Lord your God, who teaches you what is best for you, who directs you in the way you should go." Isaiah 48:17 I am praying this for us!
I guess Tait and I have reached a point where we are "leaving it all out on the field" in our fight for Connor. No stone unturned, so to speak. We will diligently seek God's direction in Connor's treatment, diligently seek His face, do everything possible to help Connor in this fight .... and then lay it all at Jesus' feet. God knew the number of Connor's days before he was even born, whether that is 8 years old or 80.
(13)"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made. (16) All the days ordained for me were written in your book before one of them came to be." Psalm 139: 13 and 16
We will rest in the knowledge that God loves Connor more than we do and He has a special plan for him. We are still believing that God is going to save Connor. We will remain steadfast, as our friend Jack Shaw directed us to. We are praying God will use these new drugs that will be put in Connor's body like he used the Israelites when they were marching around Jericho. Like the walls of Jericho, this cancer will crumble. Thank you for your continued prayers.
Please pray for Alex Podeszwa as he has scans this week. Pray for Carson Richardson and Caden Ledbetter as they continue to fight their cancer.
Still believing,
Joy Cruse
Saturday, February 7, 2009 5:20 PM CST
Connor is slowly getting stronger day by day. He went to school everyday this week, except for Monday, because he had the 24 hour stomach virus. That was fun.
He had a follow-up appt with the surgeon Monday and we have decided to keep the feeding tube in longer. He needs to gain back 7 pounds and he cannot do that with the small amount of food he can eat each day. He eats about 1/2 of what he used to eat and he needs to eat double the amount of food to gain back his weight. This small stomach is sure causing problems. He gets full so quickly, and then he gets a stomach ache and/or throws up a little bit. We are not making much headway in this area. PLEASE PRAY THAT HIS STOMACH WOULD HEAL, HE WOULD BE ABLE TO TAKE IN MORE CALORIES AND HE WOULD GAIN WEIGHT. PRAY WE CAN MAKE THIS PROGRESS WITHOUT THESE STOMACH ACHES. It is very frustrating to deal with this everyday, with everything else that is going on.
Connor's scans will be February 19 in Houston. We should have a treatment plan by then. PLEASE PRAY THE SCANS SHOW NO GROWTH WITH THIS NEW AND OLD TUMOR. PRAY FOR GUIDANCE FOR CONNOR'S TREATMENT(S). We are still investigating alternative medicine approaches that will complement the conventional therapies. There are so many different directions that it is overwhelming to me at times. I am asking for WISDOM, as King Solomon did. PLEASE PRAY FOR WISDOM/DISCERNMENT FOR US.
My friend, Mary Kim Gray, said this story of Daniel in Daniel 2 reminded her of our situation and our search for wisdom.
Daniel was asked by the king to interpret his dream. If not, he and his friends would be executed. God answered his prayer and He showed Daniel the meaning of his dream. This is Daniel's prayer in response to God's faithfulness.
'Praise be to the name of God for ever and ever;
wisdom and power are his.
He changes times and seasons;
he sets up kings and deposes them.
He gives wisdom to the wise
and knowledge to the discerning.
He reveals deep and hidden things;
he knows what lies in darkness,
and light dwells with him.
I thank and praise you, O God of my fathers:
You have given me wisdom and power,
you have made known to me what we asked of you,
you have made known to us the dream of the king.'"
As Kim is doing, please pray Daniel 2 for us--that God would reveal deep and hidden things and that the light that dwells with Him would be given to us, so that we can walk in it as we seek the perfect treatment plan for Connor. Praise God that all wisdom and power are His, and plead for mercy with us that God will give Connor perfectly restored health.
Still Believing,
Joy Cruse
Monday, January 26, 2009 5:03 PM CST
Connor went back to school today. He was so excited to see his friends. He walked in and immediately wanted to show everyone his new battle scar. Then, he started telling them stories about his hospital stay, his tubes and the games he played in the hospital. Yesterday, his friends (Sayers, Hays, Jonathan and Michael) came over to play. He ran around the backyard with them for a couple hours. He's really enjoying being home. We see improvements everyday. Thank you for your continued prayers for Connor's recovery.
Tait and I definitely feel the power of your prayers. Today, we feel revitalized, strengthened, comforted, peaceful and hopeful. I know that God is listening to everyone's prayers. Thank you.
Tait and I decided that our situation today isn't so different than it was 2 months ago. We are facing a situation where the tumor cannot be removed and doctors don't hold a lot of faith in the fact that chemo or other agents can completely kill this tumor. Sounds like the same scenario as the NB tumor, so we PRESS ON.
This song "Press On" by Selah speaks volumes for our current battle.
When the valley is deep
When the mountain is steep
When the body is weary
When we stumble and fall
When the choices are hard
When we're battered and scarred
When we've spent our resources
When we've given our all
Chorus:
In Jesus' name, we press on
In Jesus' name, we press on
Dear Lord, with the prize
Clear before our eyes
We find the strength to press on
PLEASE CONTINUE TO PRAY FOR COMPLETE HEALING FOR CONNOR, GUIDANCE FOR TREATMENT FOR CONNOR, AND PRAY THAT WE WOULD CONTINUE TO GIVE GOD ALL THE GLORY FOR HIS CONTINUED FAITHFULNESS AND HEALING!
Please pray for our friend, Carson Richardson, who is battling hepatoblastoma. Pray his AFP (markers) continue to decrease to a normal number soon. Pray for Caden Ledbetter, who is fighting Neuroblastoma a second time. Pray for complete healing for these two boys. Thanks.
Still believing,
Joy Cruse
Thursday, January 22, 2009 9:09 PM CST
We are home! Home sweet home! Connor is recuperating so well. He has not needed any pain medicine for about 30 hours now. He's eating well. Sitting up and moving around better. He even went down the slide in our backyard. God is healing him. Thank you for your prayers! He should be back at school on Monday.
The doctor told us yesterday the results of the pathology. They were not what we were hoping for. The surgeon was right about the fact that he was cutting into the old neuroblastoma tumor. The problem is that the new tumor was mixed in with the old tumor. Because of this, they believe the new tumor has grown into the old tumor further, therefore, they feel the surgeon did not get it all out. The doctor is looking into what chemo regimen would be best for Connor. She'll let us know in the next week or so what plan she has for Connor. She feels like chemo alone typically slows the cancer down, but doesn't stop it. She continued to say that no doctor expected Connor's residual NB tumor to be dead either. So, we should not give up hope. WE were taken aback and reeling yesterday by this news.
Now that we have recovered from the shock, we are back in fighting mode. I'm cruising the internet (along with some of my friends, thanks Carla!) and have found some interesting treatments for this cancer. These new treatments can work alongside the chemo. They attack the cancer from different angles. This will be important, since chemo alone doesn't do the trick. Please be in prayer for our direction. We really need God's guidance. WE may be heading back to Boston, Cincinatti or Houston. Pray for God's continued healing. We're expecting a miracle. God's performed so many miracles in Connor's life. What's one more?
Thank you for your constant prayers, support and love for us. Your prayers are enfolding us every day. Thank you for being the "hands and feet" of Christ.
35 I was hungry, and you gave me food. I was thirsty, and you gave me something to drink. I was alone and away from home, and you invited me into your house. 36 I was without clothes, and you gave me something to wear. I was sick, and you cared for me. I was in prison, and you visited me.'
37 "Then the good people will answer, 'Lord, when did we see you hungry and give you food, or thirsty and give you something to drink? 38 When did we see you alone and away from home and invite you into our house? When did we see you without clothes and give you something to wear? 39 When did we see you sick or in prison and care for you?'
40 "Then the King will answer, 'I tell you the truth, anything you did for even the least of my people here, you also did for me.' Matthew 25:35-40
Still believing,
Joy Cruse
Tuesday, January 20, 2009 2:00 PM CST
Connor is making great progress. Sunday, they took him off his morphine pump and took out his iv's, but they kept his port accessed. He started receiving Pediasure in his feeding tube, also. Yesterday, he got his ng (nose) tube out, he started drinking liquids and he had a bowel movement. Everything seems to be working well as far as his digestive system goes. He has been up walking around a lot, and he played video games in the play room. Today, they should take out the drainage tube, and he can start drinking more complex liquids like smoothies, soup, etc. If things continue to progress well, he will be released Thursday morning! Yeah! Praise God! We are ready to skip on out of here. Although we have enjoyed visits from family and friends in the hospital, there's no place like home.
PLEASE PRAY THAT WE CAN FLY HOME ON THURSDAY. PRAY FOR GREAT PATHOLOGY RESULTS. STILL WAITING ON THOSE. PRAY FOR IMPROVED STRENGTH AND WEIGHT GAIN FOR CONNOR. HE'S LOST 7 POUNDS. We'll have to give him some of those protein drinks that body builders drink. We'll bulk him up in no time.
We can't thank all of you enough for your love and support. WE have definitely felt your prayers. PLEASE CONTINUE TO THANK GOD FOR HIS CONTINUOUS MIRACLES IN CONNOR'S LIFE, AND PRAY FOR CONNOR'S COMPLETE HEALING ON EARTH. PRAY THAT TAIT AND I WILL GIVE GOD THE GLORY FOR SAVING OUR SON ONCE MORE.
"I waited patiently for the Lord; He turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; He set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put their trust in the Lord. Blessed is the man who makes the Lord his trust. Many, O Lord, are the wonders you have done....too many to declare." Psalm 40:1-5
Still believing,
Joy
Saturday, January 17, 2009 2:54 AM CST
Monday, we got the phone call from Houston that the surgery was scheduled for Wednesday. WE flew to Houston Monday night so that we could be at the clinic Tuesday to meet with the surgeon and get more blood for Connor.
Monday afternoon, the oncologist met with us to discuss the pathology results. WE exhaled deeply when they confirmed that it was not neuroblastoma. Only to get the breath knocked out of us again a second later. She explained that the pathology report said it was malignant peripheral nerve sheath tumor. It was a fast growing cancer that has the best prognosis when 100% could be removed. The challenging part for Connor was that some of this new stuff was going to be very difficult to remove. RAdiation wouldn't be an option for him and some chemotherapies may help, but she didn't think Connor would be eligible for any of those, due to the amount of chemo he has already received. At this point, we knew that we needed a miracle Wednesday in Connor's surgery.
She said that she had found a research trial where there were 20 Neuroblastoma patients who eventually got this cancer. In these cases, the patient had received radiation on the tumor, and the NB survivor then developed this cancer 8-12 years later. I guess Connor's just the lucky one who got it 2 1/2 yrs post radiation. The surgeons and oncologists in Houston have never seen this before. It does exist, but we are talking about 20 known cases in the world. She said the ironic/good news was that this kind of cancer usually grows from a dead NB tumor (a ganglioneuroma), which is a good sign that Connor's old tumor is dead. However, this good fortune was slightly lost on me, due to the fact that my son not only has been slaying one dragon, but now has to slay a second, more rare dragon. The possibility of this just boggles my mind. I'll tell you one thing, when Connor gets thru this, he will have one HUGE, AMAZING story to tell about God's power and faithfulness.
The surgery was Wednesday. WE were surrounded by family and friends (some from HOuston and some from Dallas) and two pastors from our church. Thank you, Cousins Julie, Kendall, Wayne, Kyle, Kasey, Lexie, Aunt Christie, Patrick & Kelli Matthews, Eddie Caldwell, Cindy Reeter, Pastor Jack Graham and Assoc. Pastor Mike Buster. Pastor Graham even had to decipher some of what was said by the surgeon when he accompanied us into the conference room. Our Team Connor leader, Matt Russo, even flew in from New York. We truly felt loved by your presence and your support for Connor and our family. WE can never thank all of you enough.
Yesterday, the surgeon met with us after the 9 hour surgery. He said he felt
like he had removed all the tumor and he was trying to get more of the
Neuroblastoma tumor out. He was quite disappointed he couldn't get more of the NB tumor out. He said it was hard to distinguish the line dividing the two tumors. It was unclear, but he felt like he got the new tumor out. The
pathology report will help us confirm that he got it all out.
The oncologist said she was astounded by the news from the surgeon... above and beyond what anyone expected. Doesn't that sound like our God, able to do exceedingly above all we could ask or think? Connor's outlook Tuesday didn't not look good. The oncologist was much more hopeful last night. The good news is that Connor can receive some chemotherapy if they feel like he needs some to make sure all of the cancer is dead. Hoping to have the pathology report next week, but it may take longer. They have to go thru each sample meticulously.
The surgeon went over the details of the surgery with us. The tumor had
grown quickly since the last CT scan on Dec. 23. It had eroded further into the stomach, which was causing all this heavy bleeding. It was BAD! Don't know how much longer he would have lasted. WE are so grateful to God that he worked out all the details to get us to this surgeon yesterday. Everything fell into place (another surgery was canceled for Dr. Nuchtern, so he just put Connor in his place). Thank you, God. The tumor had also eroded a little into the esophagus, so this presented an unexpected challenge for the surgeon. He removed about 1/3 of Connor's stomach and removed a small part of the
esophagus (the part that connects to the stomach. Removing part of the
esophagus made the opening into the stomach way too small, so he had to create a new opening into the stomach from the esophagus. This will take awhile to heal. I guess Connor got his stomach stapled. He'll have to eat small meals for awhile now until his stomach stretches to accommodate more food.
When we were discussing the dreary outlook on Tuesday with the Oncologist,
we felt like the Oncologist was pronouncing ANOTHER death sentence. She
reminded us that through the years many doctors or people didn't expect Connor to live thru that first year, let alone 3 1/2 years from diagnosis. She said he's already beat the odds, proved so many wrong, so we must be doing something right. We should not give up hope. She's right. We were doing something right. Believing and trusting in our one and only, Awesome God, who loves us more than we can imagine!
Connor is resting today. He woke up dry heaving, so they gave him zofran.
He was experience pain at the incision site, so they gave him morphine. He's
feeling better now. We're hoping to get out of the ICU tonight. He has
four tubes in him...the feeding tube, nose tube, drainage tube and catheter. He hates the nose tube, but it needs to stay in for a few more days until his
stomach drainage is clear and slowing.
WE should be here for 7-10 days. Please continue to pray for his healing
and pray that the surgeon got all the new tumor. Thank you so much for all your prayers! WE are humbled by your faithfulness to pray for our son! WE know that is why we saw another miracle yesterday. There were so many knocking on Heaven's Door, that God answered our prayers. Thank you from the bottom of our hearts.
Praise God for His mercies are new every morning!
JOY
Monday, January 12, 2009 5:01 PM CST
We got back from the biopsy in Houston Thursday night. Biopsy went well. Sunday morning, Connor wouldn't eat and he couldn't get off the couch. Tait carried him to the car and he went to the ER. Connor's blood counts were at 5.6. They were around 11 on Thursday. 11 is normal. 5.6 is way below normal. Looks like his bleeding is picking up speed and his ulcer is hurting more. WE e-mailed Houston and asked them to get the surgery scheduled! We feel like we are watching our son drown and no one will help him. Everyone is standing by, just watching.
Connor got home at 10:00 last night. Long day. WE went to the clinic this morning for more blood. Got a call from HOuston. Surgery is scheduled for Wednesday morning. Meeting with surgeon tomorrow. Maybe we'll have news about biopsy tomorrow. Praise God! Help is on the way! Thanks for your prayers. Keep 'em coming, please.
Love this song from Natalie Grant, "Our Hope Endures"
"Our Hope Endures"
You would think only so much can go wrong
Calamity only strikes once
And you assume this one has suffered her share
Life will be kinder from here
Oh, but sometimes the sun stays hidden for years
Sometimes the sky rains night after night
When will it clear?
But our Hope endures the worst of conditions
It's more than our optimism
Let the earth quake
Our Hope is unchanged
How do we comprehend peace within pain?
Or joy at a good man's wake?
Walk a mile with the woman whose body is racked
With illness, oh how can she laugh?
Oh, 'cause sometimes the sun stays hidden for years
Sometimes the sky rains night after night
When will it clear?
Emmanuel, God is with us
El Shaddai, all sufficient
We never walk alone
And this is our hope
But our Hope endures the worst of conditions
It's more than our optimism
Let the earth quake
Our Hope is unchanged
God bless you for praying for my son! Thanks everyone.
JOy Cruse
Sunday, January 4, 2009 4:42 PM CST
First of all, thank you all so much for your prayers, words of encouragement and offers of support. WE are truly indebted to you for your loving kindness. You are all wonderful examples of God's love; His hands and feet.
Connor received blood on Friday and we are due to get more on Monday before school starts again on Tuesday. Hopefully, he can make it to the end of the week without needing more blood.
I spoke with the surgeon in Boston Friday. He has seen the CT scan and he recognizes where the old tumor is located. Again, this looks like one large tumor. It is hard to differentiate between what is old NB and what is new. Some of this new mass (the area between what is pushing on the stomach and the old tumor) will also be hard to resect. There are a lot of blood vessels inter-twined in this mass. It's really hard to cut this out without harming all these blood vessels that run between the pancreas, spleen, stomach, intestines, etc. The part that is pushing on the stomach is easier to resect. He is recommending another biopsy to figure out what this is first, before he would resect some of this tumor. Depending on what it is, there may be some drugs that can shrink this. He does not feel like it is a GI Stromal Tumor. Those originate near/in the stomach. This new mass seems to originate from the old NB tumor.
We are waiting on the surgeon's opinion from Houston. If he recommends the biopsy first, we will go to Houston to biopsy this mass within the next few days, hopefully. Our concern is his continued blood loss. CAN YOU PLEASE PRAY TO HURRY THIS PROCESS ALONG. Now that everyone is back from Christmas vacation, hopefully, we can move things along quicker. Connor is also starting to experience abdominal pain once or twice a day, after he eats. The GI doctor was surprised he could even eat with an ulcer. That's Connor!
No one is clear on what this could be. It is quite a mystery. With NB patients (as with most cancer patients), the patients receive radiation after the tumor has been removed. Connor is the rare exception of receiving radiation to the tumor itself. Who knows what this could create? Maybe this will be some new sort of tumor. PLEASE CONTINUE TO PRAY THAT THIS IS SOME BENIGN TUMOR OR SCAR TISSUE. PRAY FOR WISDOM FOR THESE DOCTOR AND SURGEONS. PRAY FOR CONNOR TO REMAIN STRONG UNTIL WE CAN FIX THE BLEEDING ULCERS. PRAY FOR OUR PATIENCE, PEACE AND STRENGTH AS A FAMILY.
THANKS AGAIN FOR LIFTING US UP IN PRAYER.
"THE LORD YOUR GOD IS WITH YOU….HE IS MIGHTY TO SAVE…HE WILL QUIET YOU WITH HIS LOVE…HE WILL REJOICE OVER YOU WITH SINGING."
Zephaniah 3:17
"While I'm Waiting" by John Waller
I'm waiting
I'm waiting on You, Lord
And I am hopeful
I'm waiting on You, Lord
Though it is painful
But patiently, I will wait
I will move ahead, bold and confident
Takeing every step in obedience
While I'm waiting
I will serve You
While I'm waiting
I will worship
While I'm waiting
I will not faint
I'll be running the race
Even while I wait
I'm waiting
I'm waiting on You, Lord
And I am peaceful
I'm waiting on You, Lord
Though it's not easy
But faithfully, I will wait
Yes, I will wait
Joy Cruse
joycruse@grandecom.net
Monday, December 29, 2008 5:38 PM CST
We went to the clinic last Monday, the 22nd, to check Connor's red blood count. It was 4.9, dangerously low. They gave him another transfusion and they took a stool sample. There was blood in his stool, leading them to believe it was an upper GI bleed. They scheduled an endoscopy for Tuesday morning. Connor spent Monday night in the hospital receiving blood throughout the night, so that his counts would be high enough for an endoscopy Tuesday.
The endoscopy did show two bleeding ulcers and a stomach full of blood. Bingo! We have found the source of the bleeding. What we didn't expect was the cause of the ulcers. The doctors informed us that there was a mass outside the stomach pushing into the stomach wall. The mass looked to be about 4X5cm. I have to say may heart sunk to the floor. I have prayed to never hear those words again. Luckily for my sanity, the oncologist said it doesn't sound like something NB would do, go into the upper stomach. Also, the pathologist said it didn't look like Neuroblastoma. Those words were a small life raft for my sinking ship, that I clung to during this storm. The doctors said it could be some other kind of cancer or benign tumor. they took a biopsy and we waited for the results.
They did a CT scan Tuesday afternoon. The scan showed one large tumor (the old NB tumor was connected to this new tumor protruding into the stomach). At first glance, the radiologist reading the scan felt like it looked like the NB tumor had now grown immensely. The strange thing is that this new part of the tumor ( the new mass) did not light up on the MIBG scan, which was further evidence that this new mass was not NB.
WE were released from the hospital to celebrate Christmas with my family on Tuesday. Clinic on Wednesday to check Red Blood Count. Christmas at home. Friday, we went back to the hospital to get more blood. Connor's bleeding has slowed down now. Prevacid is slowing the bleeding in the ulcers.
The doctor gave me the results of the pathology reports. Not Neuroblastoma!! Praise God. That is a miracle in itself. If that ugly beast rears its ugly head again, we are in serious danger. The tumor showed spindle cells. There are 3 tumors in that family...1)myeosarcoma 2) GI Stromal Tumor and 3)Primitive Neuroectodermal Tumor. The markers for each of these tumors showed negative. Still not sure what this is. The treatment for all three is surgical removal. A new theory mentioned today is today is that it may be scar tissue growing from teh tumor caused by the surgery and radiation. This doctor was not familiar with Connor's past Ct scans and she told us that most of this tumor could not be resected, but we needed a surgeon's opinion on this. We later found out that the inoperable part is the NB part. It is unclear right now what is old NB and what is the new mass.
We have sent the Ct scan to our surgeon in Boston and a surgeon at Children's in Dallas is looking at the scan, too. After they consult with each other, they will give us their opinion as to what can and cannot be resected. The surgeon in Boston should give us the most crucial information. He will remember what he left behind and what has grown since then. We are anxiously waiting on these results. We will hopefully know something from the surgeons on Wednesday. WE may be traveling to Boston again soon. We trust Dr. Shamberger in Boston immensely. He's an incredible surgeon with the best bed side manner (which is not always part of the picture).
As you can see, we've been on an emotional roller coaster... loss of blood, bleeding ulcers, a new mass, possible NB, not NB, inoperable tumor, partial resection of tumor, when and where to do surgery. Whew! All I can say thru this whole ordeal is Praise God for his faithfulness! He has not left us nor forsaken us.
"We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He HAS DELIVERED us from such a deadly peril, and he WILL DELIVER us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many."
2 Corinthians 1:8-11
Please pray for us "Guide me, O Thou Great Jehovah, pilgrim through this barren land; I am weak, but Thou are mighty; Hold me with Thy powerful hand. Open now the crystal fountain, whence the healing stream doth flow; let the fire and cloudy pillar lead me all my journey through; Strong Deliverer, Be my Strength and Shield."
Believing,
Joy Cruse
Sunday, December 14, 2008 10:46 PM CST
Connor was released from the hospital this morning and Tait brought him home around 9:00. He's feeling much better with the 1 1/2 units of blood that poured into him all night. He actually went back to school and it was business as usual for Connor. He's such a trooper.
Here is the update from the doctor. There are a few possibilities for the cause of this low red blood count.
1. The Parvo virus or any other virus that is known to lower RBC
2. the tumor is dissolving and causing internal bleeding (not as likely because there is not blood in his urine/stool and the CT scan showed no evidence of this)
3. hemolytic anemia. Here is the doctor's quote on this. "With this isolated decrease in his Hgb level, one thing to consider would be a hemolytic anemia due to the infection. Basically, the body chews up RBC’s faster than the bone marrow can reproduce them. It can sometimes get better on its own, but sometimes requires therapy (IVIG, steroids, etc…) depending on how serious of a problem it is.
4. The cancer is back in his bone marrow. Not as likely due to his "stable disease" scan results. WE are believing this is not the case.
They took Connor's blood this morning to screen for any virus. Hopefully, they will have enough blood to screen for the hemolytic anemia. We should know something more in the next couple days. I will update everyone as soon as I know more information Thank you so much for all your prayers and words of encouragement at this time. We really appreciate them. We feel as though your prayers have carried us through this difficult day.
Please pray for our friend, Alaina, as she has her 1 yr scans tomorrow. Pray that she remains NED.
Believing,
JOY
We received the reports from the scans and the disease is still stable. Praise God!! There were a couple spots that lit up a little brighter. That could be due to different uptake of the dye or new activity. We'll have a better idea when they scan him next time. PLEASE PRAY THAT THERE IS NO NEW ACTIVITY, THAT THE DISEASE REMAINS STABLE. It is a very good sign that there were no new legion (progression).
If you remember from his scans last time, we also got his blood work done. His platelets were low last time and they needed us to have Connor's counts rechecked. When we checked them again, the platelets came up and we continued on with his current treatment. This time, his platelets and white count looked great, but his red blood count was low. The doctor wanted us to recheck them in case he needed a transfusion. We checked them today and his red blood count went even lower. He is spending the night at Children's to get a blood transfusion.
This is concerning to us as we do not know the cause of this. His blood test also showed "reactive lymphocytes" which usually indicate a virus. Some viruses can effect red blood count. We are unsure of the source of this problem. It could be the chemotherapy. It is just so strange that his red count would lower so quickly. It was fine a few weeks ago. Could the cancer be back in the bone marrow? I shudder to think that is possible. The good news is that his scans were stable and his white count and platelets were good. PLEASE PRAY FOR ANSWERS TO THESE QUESTIONS. PRAY THAT THIS IS JUST RELATED TO SOME VIRUS AND HIS COUNTS WILL GET BETTER.
"He will have no fear of bad news; his heart is steadfast, trusting in the Lord." Psalm 112:7
Here is a quote from "The High Road to Surrender" by Francis J. Roberts
"In tenderness Thou hast brought me to this place and surely in gentleness Thou wilt minister to my needs. I shall not be disheartened if I may but look upon Thy face. I may not receive a speedy answer to my prayer, but while the light is withheld, I shall trust Thee in the darkness."
Thanks for your prayers.
Joy Cruse
Monday, December 8, 2008 4:38 PM CST
We leave for Houston tomorrow. PLEASE PRAY FOR A SAFE TRIP AND GREAT SCAN RESULTS. PRAY THAT WE CAN OFFER GOD'S HOPE TO OTHERS WE MAY MEET.
Connor has been feeling great. We have recently had his blood tested for tumor markers and other indicators. So far, the blood test results have been very good. It is a good sign that the scans should be good this week. WE pray this is the case.
We are really enjoying this Christmas season. I know our schedules really get busy and life can be hectic, but I love this time of year. When I feel over-loaded and busy, I just remind myself that I shouldn't complain. I've spent 2 years of being busy at hospitals, clinics and doctor's offices. This kind of busy is a blessing!!!!! I'm busy with celebrating... Celebrating our Savior's birth, celebrating the blessing of family and friends, celebrating another Christmas holiday with my family WHOLE, and celebrating another (expected) good scan with Connor feeling great. What more can I ask?
As scan time approaches, it is easy to let my mind get carried away and let doubt set in, but I remind myself of
2 Timothy 1:7. "For God has not given us a spirit of fear, but of power and of love and of a sound mind." I also remember Psalm 112:7. "He will have no fear of bad news; his heart is steadfast, trusting in the Lord." I have to remember that God can move mountains like in verse Matthew 17:20 and not focus on the negative words/outlook of some of the doctors. "If you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you."
"I Have To Believe" by Rita Springer
(edited version)
I have to believe
That He sees my darkness
I have to believe
He knows my pain
I have to lift up
My hands to worship
Worship His name
I have to declare
That He is my refuge
I have to deny
That I am alone
I have to lift up
My eyes to the mountain
It's where my help comes from
Oh yeah
He said that He's forever faithful
He said that He's forever true
He said that He can move mountains
If He can move mountains
He can move my mountain
He can move your mountain, too
Oh, I have to stand tall
When the wind blows me over
I have to stand strong
When I'm weak and afraid
I have to grab hold
A hold of the garments
The garments of praise
I have to sing praise
When the hour is midnight
He unlocks these chains
That bind up my soul
My sin and my shame
He has forgiven and made me whole
I have to believe
He's got everything under control
I have to believe
Lord, I believe
Help my unbelief
I have to believe in You
I have to believe
I just love that song. Thanks again for all your prayers!
Joy Cruse
Wednesday, November 19, 2008 2:14 PM CST
Connor started his first autologous bone marrow transplant 3 years ago on November 7th. I cannot believe it has been that long ago. Tait asked Connor if he remembered what happened on that date 3 years ago and he said he didn't. With further prompting, he remembered he was in the hospital. He didn't remember much of his hospital stay. He didn't remember 30 days in the hospital, or 7 days of continuous chemo. He didn't remember throwing up constantly, nose bleeds that wouldn't stop without a platelet transfusion, or not being able allowed to see Carson or Mason (3 weeks old) because they were not allowed in the Bone Marrow Unit. All he could remember was playing with Daddy at the hospital and asking Jesus in his heart on Thanksgiving Day. Wow! What a blessing for him. We are so thankful that God has mercifully erased those bad memories, and only left him with good ones. That is truly the "peace" that only comes from God.
I met a man who lost his granddaughter to Neuroblastoma during her transplant. She got an infection a few days before she was to be released from the hospital. Her white count (immune system) had not fully recovered from the chemo, and she did not recover from the infection. Again, a reminder that God's grace and protection covered Connor during his transplant.
Remembering that long stay and reading our friends' journal updates causes us to count our blessings. I recently read an update from Carson Richardson's web page, where they had to take him to the clinic to get his counts. His counts were low, so they had to stay for a blood transfusion, which lasted all day. Oh, those were the days. It seems like it was forever ago when that was our "normal" We'd be stuck in the clinic all day, and I'd have to juggle who would pick up the kids at carpool and who could take care of Mason at home. I don't know how we managed it, except through the grace of God. Nothing else can strengthen a parent to endure that.
I'm not sure when that "normal" changed to this new easier, less intense "normal", but Thank YOU, God, it did. When we look back and see that that normal is a memory, we just get on our knees and thank God. Will this new "normal" last forever? I believe it will, but whatever comes, God is still in control and we will trust Him.
So this Thanksgiving Season, we are counting our blessings of brighter days, easier treatments, normalcy, our family being whole, God's grace, mercy, strength, comfort, guidance, peace, love and hope for tomorrow.
"Bless the Lord, O my soul; and all that is within me, bless His holy name! Who forgives all your iniquities, who heals all your diseases, who redeems your life from destruction, who crowns you with loving-kindness, and tender mercies, who satisfies your mouth with good things, so that your youth is renewed like the eagle's." Psalm 103:1-5
Connor's scans are scheduled for December 10th and 11th. Please pray for GREAT SCAN RESULTS.
Happy Thanksgiving! Happy Birthday, sister-in-law Patricia, brother Clark, nephews Landon and Mitch, and Hannah and Grant Gosser, and Shannon Callaway! As you can tell, these next few days are full of birthdays for our family and close friends!
Joy Cruse
Monday, November 3, 2008 10:43 PM CST
Another 2 weeks of normalcy in the Cruse household. We'll be scheduling scans for Connor in December. Please pray for great scan results.
Thanks for praying for our three friends. Grayson Perron's brain stem surgery to remove the tumor went very well. They removed 95% of it (more than they ever expected). Praise God! Grayson Bradshaw is back to NED (No Evidence of Disease) and he will start Antibody Treatment in New York for his neuroblastoma. Carson Richardson's cancer marker has decreased remarkably. They will repeat scans soon. Please continue to pray for these sweet boys.
As Tait and I spoke with Grayson Perron's parents before the surgery, we were trying to give them some advice, some scriptures and at least an idea of what to expect during such a long, difficult surgery. We have felt honored that we could help this family during their difficult journey.
It dawned on me that if God had answered my original prayer to remove all the tumors and traces of the cancer in Connor in that first month, I would not be of much help to the Perron family. We really hoped and prayed that the cancer would miraculously disappear and nothing would show up on that first repeat cat scan back in July of '05. When the results showed only a minor decrease in size, we were quite disappointed. Soon after the scan results, I found this verse in James 4:3. "When you ask, you do not receive, because you ask with wrong motives, that you may spend what you get on your pleasures." I realized my prayers were definitely selfish. I did not want to go through this pain with my son. I wanted God to remove this trial from our lives. Who would want to go through 3.5 years of fighting cancer with their son, right?
If God had answered that prayer, I would definitely not be able to comfort families like the Perron's. It's like a light bulb went off in my head. I have read this verse in 2 Corinthians before, but it now has new meaning for me.
“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. “
2 Corinthians 1:3-4
Many times Tait and I have wondered why Connor's battle against cancer has been so long, arduous and unclear. Wouldn't it be nice if Connor could just get to NED like most of the other neuroblastoma patients? Why couldn't his tumors shrink enough for the surgeons to remove it all? This "gray" area that Connor always seems to be in, is quite daunting and frustrating. Maybe now I have an answer to those questions. Maybe it is just for this reason in 2 Corinthians; so that we can give comfort to others who are going through similar battles. So, we will keep marching on in this battle against cancer and we will look for other fallen patients along this path to whom we can offer His comfort, guidance and hope.
Joy Cruse
Wednesday, October 15, 2008 11:23 PM CDT
It's been another week of blissful normalcy at the Cruse household. A week of math, vocabulary and spelling tests. A week of volleyball, football, piano and dance. Running kids here and there. I could get used to this.
As much as I'm appreciating this time of normalcy, my heart has been heavy for three friends of ours, Grayson Perron (supergman.livejournal.com), Grayson Bradshaw (www.caringbridge.org/visit/graysonbradshaw) and Carson Richardson (www.caringbridge.org/visit/richardson). Grayson Perron is facing surgery on his brain stem at the end of the month to remove a tumor. Grayson Bradshaw is being re-scanned in NY this week to see if the new chemo has stopped the progression of his relapsed Neuroblastoma. Carson Richardson is beginning his new chemo regimen to see if it will stop his progressing hepatoblastoma cancer.
All three of these families are in an intense battle right now. It just reminds me of Connor's first 2 years of treatment. Looking back it seems like it was so long ago. Lately, I've been feeling a little lax; not on guard. Connor's treatment has been so easy compared to the first 2 years that I almost feel complacent. You get used to feeling always "ready for battle" and now I feel as though I am not on watch. Like something will sneak up on me. The cancer, maybe? Gotta leave that in God's hands.
As I've been studying the Israelites in my Bible Study, I think I understand where these feelings are coming from. Many times, God reminded them to not forget how far he had taken them... "Only take heed to yourself, and keep your soul diligently, lest you forget the things which your eyes saw, and lest they depart from your heart all the days of your life; but make them known to your children and your children's children." Deuteronomy 4:9 He's warning them that if they forget His faithfulness, His Red Sea Miracle, their hearts might wander; which did happen on numerous occasions. "The children of Israel didn't remember Yahweh their God, who had delivered them out of the hand of all their enemies on every side." Judges 8:34
I am praying that I will follow God's instructions. I do not want to forget how far He has brought Connor, how far he has carried our family. Connor is our Red Sea Miracle. This remembrance will help me focus on His faithfulness when new trials arise. It will remind me that He will never leave me nor forsake me just as God reminded Joshua as he was getting ready to lead the Israelites into their Promised Land. "Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go." Joshua 1:9
Meredith Andrews song "I Am Not Alone" reminds us that He will never leave us.
I search for love
When the night came and it closed in
I was alone
but you found me where I was hiding
and though I'll never ever be the same
It was the sweetest voice that called my name
singing
You're not alone
For I am here
let me wipe away every fear
My love I've never left your side
I have seen you through the darkest night
and I'm the one that's loved you all your life
All of your life
You cry yourself 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
**sayin'
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 nights
And I'm the one that's love you all your life
All your life
Faithful and true... Forever
For my love will carry you....
Please pray for the families mentioned above and continue to pray for Connor. Pray that we don't forget God's faithfulness.
Joy Cruse
Thursday, October 2, 2008 10:43 AM CDT
1,216 days since Connor was diagnosed on May 15, 2005. Today, October 2, 2008 we celebrate his birthday. Connor is eight-years-old. My son is eight-years-old. My son has walked this journey for 1,216 days and oh, how grateful we are for his being eight. How grateful we are for Legos on the carpet when we step on them in the middle of the night. How grateful we are for his fun-loving, adventurous spirit. How grateful we are for 1,216 days of life.
Thank you my friends for your prayers, your support, and tonight while you are getting ready for bed, please say a little prayer, and thank God that Connor is eight-years-old.
Tait
Friday, September 19, 2008 3:25 PM CDT
Connor's feeling great. School is wonderful. Connor loves his new teacher and his classmates. Connor loves reading this year. Last year, he was tutored in reading by his teacher. He was behind due to all the school he missed in Kindergarten. In the second semester of 1st grade, his reading increased exponentially. Now he reads so much in class, his teacher has to ask him to put his book away. He'll sit down to do his homework and start reading a book until he finishes it 45 minutes later. It is such a relief to know that the chemotherapy didn't affect his mental abilities in a drastic way. It is a big risk factor. Praise God!!!
I was listening to the song "The Time of My Life" by David Cook a couple days ago. After really listening to the words, it struck me how we are all waiting on something until we can proceed or succeed. When Connor was first diagnosed, Tait and I would say "we'll do _____ whenever Connor is better." I think we often miss out on blessings when we are waiting to act. We often feel like we will find happiness when the trial has passed or we'll be strong when we are not so weary or tired. But God promises us something different in His Word.
"Even youths grow tired and weary and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:30,31
Tait and I could say that we will believe that Connor is healed when we can see all the evidence that confirms that belief. Or we can cling to the promise in Hebrews 11:1. "Now faith is being sure of what we hope for and certain of what we do not see."
We often say that I will forgive them when they apologize. I will be happy when I lose 15 pounds or when I reach my goal. I will start enjoying all the blessings God has given me when I stop feeling sorry for myself and my situation. WE need to STOP all this. Through God, we have the ability to do all these things RIGHT NOW. I can FORGIVE now. I can BELIEVE now. I can have JOY now. I can be STRONG now. I can PRAISE HIM now.
I know I sound like I'm on my soap box, but we are all missing out on God's ability to work through us and God's willingness to bless us. We just have to plug in to HIM. Our time is NOW. This could be the time of our life...NOW. So, stop waiting! Enjoy!
I’ve been waiting for my dreams
To turn into something
I could believe in
And looking for that
Magic rainbow
On the horizon
I couldn’t see it
Until I let go
Gave into love and watched all the bitterness burn
Now I’m coming alive
Body and soul
And feelin’ my world start to turn
And I’ll taste every moment
And live it out loud
I know this is the time,
This is the time
To be more than a name
Or a face in the crowd
I know this is the time
This is the time of my life
Time of my life
Holding onto things that vanished
Into the air
Left me in pieces
But now I’m rising from the ashes
Finding my wings
And all that I needed
Was there all along
Within my reach
As close as the beat of my heart
and I’ll taste every moment
And live it out loud
I know this is the time,
This is the time to be
More than a name
Or a face in the crowd
I know this is the time
This is the time of my life
Time of my life
Please pray our friend Carson Richardson (www.caringbridge.org/visit/richardson). He has been battling Stage IV hepatoblastoma for 2 years now. A couple months ago, the surgeon removed tumors that had spread to his lungs. Several tumors have already appeared in his lungs again. They don't know where to turn medically. There are not a lot of options. Please pray for him.
Joy Cruse
Monday, September 8, 2008 11:25 PM CDT
Yes, I'm back. The beginning of school has been a busy transition for me this year. We started school and then we were out of town 2 weekends in a row. Lately, I have felt like I'm always one step behind. Anyway, I can finally update everyone.
We had Connor's blood retested last Friday and his counts came up nicely. His platelets rose 30,000. Praise God! I guess we get to keep our safety net (the chemo pill) a little while longer. I guess we will just keep on this low dose regimen until further notice. Thank you, everyone, for your prayers. God's power is working through Connor.
"But we have this treasure in jars of clay to show that this all surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed." II Corinthians 4: 7-8
This weekend, Team Connor will be participating in the TX Tough Tour. The TX Tough tour is a pledge-based, fund-raising event dedicated exclusively to raising money for Children’s Medical Center. When you sign up, you’re challenging yourself to raise money for Children’s and participate in a RUN, SWIM, or BIKE event. Each stage is held at a different time of the year (the RUN is in March, SWIM in June, and BIKE in September). You can choose to participate in one, two, or all three stages. Each stage offers opportunities to watch professional level racing, enjoy fun activities with the kids, great food, and live music. THIS EVENT IS ALSO IN NEED OF MANY VOLUNTEERS TO MAKE THINGS RUN SMOOTHLY.
TeamConnor is going to participate in this tour of events through racing and volunteering. Both the volunteers and the racers will be able to raise money for the cause. Our team will be able to choose specifically where our money will be used at Children’s Medical Center. Our money will go to the Research Institute at Children’s, specifically for Neuroblastoma research. This research funding will also be instrumental in recruiting a Neuroblastoma specialist for Children's Medical Center. Many local children have had to seek treatment out of state for relapsed or refractory Neuroblastoma. Being treated locally will be an incredible advantage for these families. The money we raise will go to change the lives of these children and Connor.
Please pray for me and the rest of TeamConnor as we ride our bikes this weekend. I will be riding 40km, but some of us are riding 112 miles. Whew! The smallest distance is 10km. If anyone is interested in joining us, please log on to www.txtough.org and sign up under TeamConnor.
Tuesday morning, Geoff Godsey (with TX Tough) and I will be on Good Morning TX to talk about TX Tough and TeamConnor. Should be fun.
In Christ,
Joy Cruse
Monday, August 18, 2008 10:55 PM CDT
Great news! We have the results from the scans. Stable. Unchanged. The cat scan said even a little smaller. My take on that is the old dead tumor is shriveling up even more. Thank you for your faithful prayers. I'm convinced your prayers have made the difference in Connor's outcome.
"Let us hold fast the confession of our hope without wavering, for He who promised his faithful." Hebrews 10:23
The doctor noticed that Connor's blood count is a little lower this time than last time in March. His platelets have dropped from 110,000 to 64,000. His white count and red blood count have dropped slightly also. There are a few possible reasons for this. He's been sick on and off all summer with a coughing virus and a stomach virus. This can lower his counts. It could be the low dose chemotherapy is becoming toxic to his weak bone marrow. It's been thru a lot in the last 3 years. Another possibility is the disease is back in the bone marrow. Because the disease is not spreading, I don't believe this is the case. We will re-test his blood in a few weeks and we'll go from there.
If his counts don't come back up, we may have to lower his dosage of chemo or take him off of it altogether. At first, these options are quite scary for me. Connor is finished with his Zometa (osteoporosis drug) for now. Zometa keeps the bone disease from spreading, but they limit the number of infusions to 12. Right now, Connor is only taking the low dose oral chemo. If he cannot take the chemo anymore, he will not be on any treatment. There are new trials coming up, but nothing ready for Connor now. It may be years until they are ready. I feel like Connor would be left very vulnerable to the disease. He will be left without a safety net.
At second glance, taking Connor off the chemo may be an answer to prayer?? We've been praying specifically for God's guidance in Connor's treatment. When do we stop the chemo? The doctors and I don't feel comfortable stopping it right now. It is a safety net in place. What if Connor is forced to stop taking the chemo? Maybe this is our leap of faith. Maybe God is saying trust me. When we were on the fence about whether Connor should have the surgery in NY, it was all dependent on his platelets. I prayed specifically that the answer would be clear based on Connor's platelets. His platelets dropped even more and NY cancelled the surgery indefinitely. To the doctors in NY, this was detrimental to Connor, but I looked at it as an answer to our prayer. God was guiding us.
Over the past three years, I have learned that God takes us down many unforeseen roads, unexplained directions and confusing paths. To our limited view, it is all perplexing. But, God never does anything the way our simple minds imagine.
We are studying Joshua in our Sunday School class right now. Can you imagine what the Israelites thought when God told them to just walk around the city of Jericho and the walls would fall. I'm sure it sounded crazy to them, but God wanted to take them on a path that would give Him the most glory. It was a crazy, unforgettable and questionable plan, but He worked it out! Connor has definitely not taken the "right" path according to all the doctors/surgeons. His path has been swerving, confusing and unique. But, maybe that is the best path of all. One that only has answers in God's strength, His healing abilities and His Sovereignty.
My request to you is that you would pray for GOD'S DIRECTION. HELP US VIEW THIS LOW BLOOD COUNT AS A ROAD SIGN SHOWING US WHERE TO GO. I KNOW THAT AS LONG AS WE'RE ON GOD'S PATH, WE ARE GOING THE RIGHT WAY. THAT IS ALL THAT MATTERS. WE DON'T HAVE TO GO THE TRADITIONAL PATH THAT THE "SPECIALISTS" TELL US WE HAVE TO BE ON. WE JUST HAVE TO BE ON GOD'S PATH. PRAY FOR OUR FAITH TO BE STRONG IF OUR "SAFETY NET" IS REMOVED.
Please pray for Grayson as he heals from his surgery that removed new spots that have shown up and he starts chemotherapy again. Strength for his family!
Joy Cruse
Monday, August 4, 2008 5:21 PM CDT
Thanks for checking in on Connor. He's still enjoying summer, although it is quickly coming to an end. This weekend, we are flying to New Caanan, CT for the 400 for 400 Relay. Tait and I will be running 2 five mile legs each. It will take three days for the relay runners to complete 400 miles. I'm hoping that running in the cooler temperatures will be much easier than running in this TX 100 degree heat. So far, we have raised almost $30,000 for this event. Thank you, Matt and Tonya Russo, for everything you have done for TeamConnor. Thanks to all our friends who have donate money. WE appreciate you all so much!
Currently, Tait is in Minnesota at a golf tournament where the proceeds will go to TeamConnor. Our friends, the Bohannon's, have a NMFN office in MN. Each year, they hold this golf tournament to benefit childhood cancer research. This year, they chose Teamconnor to be the beneficiary. Tait will be picking up a $50,000 check. Thank you so much, Tim and Joey!
Tait and I are in awe of this out-poring of love from so many people. We can never face another day without gratitude in our hearts to each one of you who support us. We are humbled by you generosity and your prayers.
Recently, I was at the Neuroblastoma Conference in Chicago, sponsored by the CNCF (Children's Neuroblastoma Cancer Foundation). It is a wonderful event that is directed specifically towards NB parents. Many top neuroblastoma doctors from several institutions around the country were present. Each one took their time to explain new findings on Neuroblastoma and potential treatments. Several new treatments are ready for a Phase I or Phase II trials and some other treatments will hopefully be ready soon.
Most of these parents have children who have relapsed or have refractory disease like Connor. For these children, there are no absolutes, no proven path, no assured success story. Unfortunately, like Connor, these children are not given much hope for survival. Yes, there are new treatments that will prolong their lives, but we do not know if these treatments are curative. Fortunately for us, Connor's disease is stable, and we know this is a true miracle. But most doctors do not put much hope in the fact that it will remain stable. Of course, we believe God has been and will continue to do great things in Connor's life. Connor is in God's hands and only He knows the plans that He has for Connor.
"being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus." Phillipians 1:6
But, I don't think it is an accident that Connor will never be No Evidence of Disease. I think this prognosis is what prompts us to find better treatments for Connor and other NB children. Every parent in that conference room had one unspoken question on their minds....Will my child live long enough to see the benefits of these new treatments? We can all only hope and pray for that.
It is truly a race against time and some children have run out of time. These funds we raise will hopefully spur these new treatments forward to be available in time to save these children.
Thank you so much for your support and please continue to PRAY FOR CONNOR'S UPCOMING SCANS. IT HAS BEEN 5 MONTHS SINCE THE LAST SCAN. This is the longest he has gone in between scans.
JOY
Wednesday, July 16, 2008 1:01 PM CDT
Summer is heating up! The kids are enjoying their summer activities. When I picked Connor up everyday after Sky Ranch Camp, he would say it was "GREAT" and asked if he could come back next year. He is so enthusiastic. At the end of the school year, PCA's teachers hand out certificates to each of their students that indicates one of their strong character traits. Connor's trait was ENTHUSIASM which means "expressing with my spirit the joy of my soul." The verse she referenced was "Rejoice always. Do not quench the spirit." I Thessalonians 5:16, 19. At Sky Ranch Camp, they said his character trait was BOLDNESS.
I think both of those words exemplify Connor's character. He approaches life with such enthusiasm and boldness. Whether it is the way he loves with such exuberance and abandon or the way he approaches his fight against cancer with tenacity and silent perseverance, I am amazed! The past three years of this intense battle has not quenched his spirit. It is just more evidence of God's Hand on his life. "The joy of the Lord is my strength." Psalms
I see now that God has strengthened my son for this battle. As a toddler, he was very whiny and clingy when he didn't feel well. Now, he treats feeling ill as a passing annoyance. I picked him up from baseball camp yesterday and asked him how it went. He said "GREAT" (no surprise there). He said his favorite part was batting and his least favorite was running around the field. He said he got half way around the field and he started coughing (he's had congestion for a few days and a bad cough). He had to stop while he was coughing and he threw up a little bit because he was coughing so hard. He said he finished coughing and completed the lap. No big deal. Like I said earlier, God has given Connor strength and fortitude beyond his 7 years to endure this battle.
"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us." Ephesians 3:20
Thanks for your prayers. PLEASE CONTINUE TO PRAY FOR CONNOR'S SCANS IN AUGUST.
Thanks,
Joy Cruse
Monday, July 7, 2008 5:47 PM CDT
Connor is participating at Sky Ranch Camp at their school this week. Today, he said it was "great!" He loved the flag football and water war. He continues to thrive and feel well, contrary to the evidence on his scans. Thank you again for your continued prayers and support. Connor's follow-up scans will be next month before school begins. PLEASE PRAY FOR STABLE OR DECREASED DISEASE!
I've been thinking a lot about Alexa this week and how heart-breaking it must be for parents to grieve for the loss of a child. It may be difficult to hold on to their faith during this time, yet there is really nothing else to hold on to when you are in sinking sand. Sure, family members and friends offer strong support, but only God can provide the peace and comfort we all seek when we mourn.
"Blessed are those who mourn, for they shall be comforted."
Matthew
I was listening to "I Still Believe" by Jeremy Camp last week and I immediately thought of the Aigner family. In the midst of their circumstances, I think they would agree with the words in this song. I know that the words provide comfort for me; that even in this fallen and difficult world, I still believe in His Faithfulness.
Scattered words and empty thoughts
Seem to pour from my heart
I've never felt so torn before
Seems i dont know where to start
But its now i feel your grace fall like rain
From every fingertip washing away my pain
I still believe in your faithfulness
I still believe in your truth
I still believe in your holy word
Even when I dont see I still believe
Though the questions still fog up my mind
With promises i still seem to bear
Even when answers slowly unwind
It's my heart I see you prepare
But its now that I feel your grace fall like rain
From every fingertip washing away my pain
The only place I can go is into your arms
Where I throw to you my feeble prayers in brokeness
I can see that this is your will for me
Help me to know you are near
"In this world you will have trouble. But take heart! I have overcome the world." John 16:33
Joy Cruse
Sunday, June 29, 2008 4:01 PM CDT
We just got back from sunny California. The whole family had a great time. My two nieces joined us, too. MacKenzie was glad to have some other females along for the rides. For once, I was not outnumbered by males. It was nice to have some other girls on the trip. Connor loved Lego Land and the ocean. The beaches in San Diego were beautiful.
While we were in Los Angeles, we found out that our little friend, Alexa, passed away. She has been in the ICU for a few weeks. Her current treatment has kept her refractory neuroblastoma under control for a little while now. What started out as pneumonia turned into Acute Respiratory Distress Syndrome. Because her immune system was weak from the chemo, it could not overcome the illness. My heart breaks for that sweet family. This is such a horrible disease. At times like this, I can't help but wonder "how many more children will lose their battle?" I feel so helpless.
Knowing that Alexa was in the hospital, I couldn't help staring at Connor on all those roller coaster rides. He would approach them all with no fear. He would throw his hands up in the air and laugh all the way thru the ride. When, he got off the ride, he would yell, "That was awesome!" I cherished watching him thrive and enjoy life! I'm so thankful for the opportunity to enjoy this family time with Connor.
We'll just keeping looking to the Lord for our strength and guidance. PLEASE PRAY FOR ALEXA'S FAMILY DURING THIS DIFFICULT TIME.
"God is our refuge and strength, a very present help in trouble."
--Psalm 46:1
Words from Pastor Jack Graham....
"All Christians will face difficulties and struggles. But there is one element that separates those who live a defeated life from those who live a victorious life.
It all has to do with where you find your source of strength.
Perhaps you are facing problems with your health, family, finances, or career. Whatever you are facing, I want to remind you to look to the Lord for His strength.
It might seem like you will never come out from under the weight of despair. But as you call upon Him, and draw strength from His Word and His presence, He will give you the strength you need to persevere.
Be encouraged today by the words of Isaiah 40:29-31:
He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.
The Lord knows your situation, and He is with you to help you through this time.
WHEN YOU FEEL THAT ALL OF YOUR STRENGTH IS GONE, INVITE THE LORD TO RENEW YOU WITH HIS STRENGTH."
In Christ,
Joy Cruse
Wednesday, June 18, 2008 2:42 PM CDT
We've been enjoying the long days of summer. Connor and the kids are enjoying Vacation Bible School this week. Connor is feeling well, except for bronchitis and sinusitis. Please say a prayer that he can kick this 2 week cough before our family vacation next week. We'll be visiting Sunny California: LA and San Diego. We'll be visiting Disneyland and Legoland, among the many other sights.
As for Connor's treatment, it is business as usual. Connor's gotten a little bit of attention in the media recently. First, he and Jon Gordon were on Channel 5 news with a story about Jon Gordon's book tour. It was a great story about how Connor impressed Jon with his "no complaining" attitude (which fits right in with his new book, "The No Complaining Rule"). He was also in the Dallas Morning News with Tait and the fam. It was an article about Tait's transition into being the Managing Partner at Northwestern only a few short months before Connor was diagnosed. It was like a recap of the last three years. Cheryl Hall did a great job on the story. We'll make sure and put the links on the website.
A few weeks ago, I gave my testimony in our Sunday School Class. I mentioned that most of the time, I feel God's strength and peace during this journey. But, there are times when I feel afraid and weak. It's at times like these that I turn to the Word of God and I shared several verses with the class.
In response to this, a friend of mine from class sent me a card last week with some encouraging words. It was from a message made famous by King George VI of Britain. He was concluding his 1939 Christmas Day Message to the empire, just a few months after the beginning of World War II.
"I said to the man who stood at the Gate of the year
'Give me a light that I may tread safely into the unknown.'
And he replied, 'Go out into the darkness, and put your hand into the Hand of God.
That shall be better than a light, and safer than a known way.'
So I went forth, and finding the Hand of God
Trod gladly into the night
He led me towards the hills
And the breaking of the day in the lone east.
So heart be still
What need our human life to know
If God hath comprehension?
In all the dizzy strife of things
Both high and low
God hideth His intention."
Although our journey may be dark and our destination unknown, God will always be there to guide us. That knowledge gives me the strength and peace that I need to help continue on our journey.
"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." Isaiah 41:10
Thanks for your continued prayers for Connor's healing. Please pray for our friend Alexa (www.caringbridge.org/visit/alexaaigner).
She has been fighting Neuroblastoma for over 2 years and she is currently in ICU fighting pneumonia and the possibility that her disease has spread to her lungs. Please storm the gates of heaven for her.
Joy Cruse
Monday, June 2, 2008 2:27 PM CDT
After Tait's last entry, I decided to wait awhile before changing the journal entry. I wanted to leave Tait's on there for a couple weeks. His words spoke volumes on how we are feeling these days.
Connor is still feeling great. He's enjoying baseball, which ends this week. He's also looking forward to summer. Our last day of school was last Friday. We are celebrating our first few days of summer vacation by being lazy this week.
Over the summer, we will continue on our same course of treatment for Connor. We will be in Houston in mid August for scans and a review of the last year. We will discuss our options, limited as they may be. Should we continue on this course or look for something different? PLEASE BE IN PRAYER FOR US AS WE TRY TO DETERMINE THE BEST PATH FOR CONNOR. PRAY THAT WE WILL SEEK AND FIND GOD'S GUIDANCE FOR US. As I mentioned before, there is no proven path for Connor in his current diagnosis: stable refractory disease. We are researching some new options/trials that may be available for Connor.
It is quite burdensome to have our child's "battle" be dependent on our decisions for his next course of action. I realize God is in control and He has directed our path in a most timely and remarkable manner, but we still want to make sure we are following His guidance for Connor. Do we continue to coast or look for something more aggressive? Will something more aggressive tear Connor's strength down, leaving him unable to fight the cancer? Sometimes the weight of these questions are quite consuming and heavy. WE CERTAINLY COVET YOUR PRAYERS HERE.
"The steps of a good man are ordered by the Lord."
Psalm 37:23
"Trust in the Lord with all your heart and do not lean on your own understanding, in all your ways acknowledge Him and He will make your paths straight." Proverbs 3:5-6
Thank you to everyone who joined us at the Purple Cow in Plano. We had a great time there last Tuesday. Next week, I'll give you the update on how much money was raised for Neuroblastoma research at this event.
Also, don't forget about Power Lunch with Jon Gordon next Tuesday. He is the best-selling author of "The Energy Bus." He will be at Prestonwood Baptist Church at 11:30 next Tuesday promoting his new book, "The No Complaining Rule." A percentage of his book tour will go to TeamConnor. There will be several articles and radio/tv interviews about Jon Gordon's visit to Plano. Be on the look-out for any news regarding this event.
Thanks again for all your prayers and support.
Joy Cruse
Thursday, May 15, 2008 9:43 AM CDT
Well, it's May 15th, 2008. 36 months ago today my normal changed. It was a normal Sunday, like any other Sunday, getting ready for church, the smell of spring in the air, getting kids ready to go swimming, ride bicycles, wrestle, throw the ball, grill out, but something happened May 15th, 2005 that forever changed my life. It was around 4:00 that day. A client of mine by the name of Dr. Okada informed Joy and me that Connor had been diagnosed with Stage 4+ Neuroblastoma. Tumors were in his legs, both leg bones, shoulders, pelvis, rib, around his spine, behind his heart, and there was a nine centimeter mass throughout his stomach from his left adrenal gland. As the news poured in, so did friends and family. Deacons and Elders from a church we were not even members of yet, Prestonwood Baptist Church, came. As more and more doctors gathered, around 6:00 that night, huddled like football players trying to figure out the next move, my hopes were diminishing fast. They talked of emergency surgery to remove the tumor that next morning, quickly dashed to inoperable. The hopes of a father watching his son play baseball, football, even getting married one day, much less growing up to be a young man were quickly fading. As more and more tears came from family members and friends, more and more doctors showed up. As the night got darker and we went into the first hospital room at Children's Medical Center on the 10th floor of the Oncology Department to spend the night with our very sick child, the doctors disappeared and the friends said they'd be back tomorrow. All we had was a machine beeping and my four year old son bewildered. Our lives had been shaken and turned upside down; a new normal had been defined. That was our first six hours of living with Stage 4 cancer.
Thirty-six months later Connor continues to amaze the physicians. After over 260 nights in the hospital, 100's of visits to the hospital, trips to Chicago, New York, Boston, two bone marrow transplants, 18 rounds of radiation, 14 rounds of chemo therapy, and 44 pills a day, including a small chemo pill he currently takes, we keep getting the same thing. How does he continue to live? A physician's assistant told Joy two weeks ago, "We have no children like Connor. We either have children with no evidence of disease, still at risk the cancer will come back, or all the children are gone."
How does Connor continue to do it 36 months later? That's where I say to each one of you reading this, thank you for your prayers, thank you for your support. We are living a miracle every day. Most fathers this weekend will be cheering their children on to batting and baseball, getting ready for football this fall, swim lessons. As a father of three boys, there's anticipation of summer, bike riding, baseball, football and soccer. Today I wake up with the anticipation of my son fighting this Herculean battle of cancer. He does hit singles and doubles in baseball, and he is the slowest child out there because he has no muscles in his legs. They're just now starting to form. Connor is starting to ride his bicycle without training wheels. He's about two years behind in his physical development and in some other areas. But Connor has lived more in seven years than some people will live in 80 years. Connor has more faith than most people I know. He lives each day to the fullest.
I am grateful for all of you, for your prayers and your support. Please take this away today: 36 months ago our world was changed. Please say a prayer for Connor for another 36 months of life. And while you're praying, thank God that your normal is probably still normal today. And when your normal changes to a new normal, trust me, God will be there through the thick and thin, and through the darkest valleys if you all allow him to. I wish all of you a happy summer.
Warmest regards,
Tait
Monday, May 5, 2008 1:22 PM CDT
A few weeks ago, we all went to the Children's Cancer Fund Fashion Show and Luncheon. It was such a great show. I love watching all the cancer patients be the models in the show. They walk down the runway with several different local celebrities like Linda Armstrong Kelly, Miss Texas, some Dallas Cowboys, the SWAT team, the Stars Ice Girls and several others. I've always enjoyed being a spectator at the show, but this year I got to enjoy everything from behind the scenes, because I was one of the co-chairmen.
The show also raises money for childhood cancer research. It felt amazing to be able to help with the cause to fight cancer by raising research funds. As a parent, we always want to protect our children from harm or pain. When your child is diagnosed with cancer, your ability to protect them is suddenly lost. You feel helpless. You can only sit by and watch them deal with their horrible treatments and all those side effects. Helping this organization has given me a small sense of being able to help Connor and all the other children who are fighting this horrible disease. Thank you to all my friends who helped me on the committee and who came to the show to support Connor and our efforts to find a cure. Connor enjoyed seeing all of his teachers (from PreK to 1st grade) at the Fashion Show. New pictures from this event should be on the website soon.
This year, Connor was a Survivor in the Fashion Show. The first 2 years the children are the models for the show, but then on their 3rd year and beyond they walk down the runway at the end of the show with the "survivor" group. It is quite inspirational to see all those survivors walking down the runway together. I always get teary eyed. I was extra thankful that Connor was back again this year to be recognized as a survivor.
Tait and I have recently been focusing on our gratitude for Connor's continued presence with us. Being a "survivor" in the Fashion Show was just another reminder to be thankful. Connor had an appointment with the oncology staff here in Dallas last week. The nurse practitioner I have come to rely on told me some interesting information. He said that Connor was the only child that he was still taking care of this far past his transplant date. All the other children are NED (No evidence of disease) or they have passed away. It is yet another reminder that God has brought us to this miraculous point. There is no explanation, no guarantee and no reason why Connor should be here, but yet here he is. He looks and feels marvelous. He is enjoying every day to the fullest. Tait and I have decided we have no room to complain. We should be grateful everyday that God has given Connor this miracle of life; that God has given us another day, another month, and soon another year (3 years mark in 10 days) with Connor .
"In everything give thanks; for this is the will of God in Christ Jesus concerning you." I Thessalonians 5:18
Thank you for your continued prayer and your part in our miracle. We appreciate you all so much.
Please pray for our friend, Grayson, (www.caringbridge.org/visit/graysonbradshaw) as he and his family are waiting scan results and possible resection of a new "spot" that has shown up. He has been NED for several months now. We are praying that this is not a relapse.
Joy Cruse
Sunday, April 27, 2008 10:21 PM CDT
It's been a crazy weekend, filled with volleyball and baseball games, music theory class, choir practice and movie night with the kids. Tait was turkey hunting this weekend, so I ran the taxi service myself. All that being said, I'm not complaining! We had a busy, yet FUN weekend. My perspective has changed. Everyone is busy doing something. I'm just glad I'm not busy spending all my time at the hospital. I'd much rather spend my time running my kids to their various activities. Thank you, God!
All this talk about complaining reminds me of someone Tait met at Northwestern's Southern Regional Meeting. His name is Jon Gordon and he's an author. His first book is called the "Energy Bus" (National Best Seller) and he's just finishing his second book, "The No Complaining Rule." He will be starting a book tour this summer and he's coming to Dallas in June. I'll give more details later about the time and place. After speaking with Tait at the meeting, Jon was very impressed with Connor's story. I'll just copy his newsletter for my journal entry today.
This Boy Will Inspire You!
I'm wearing one of those rubber bracelets. Similar to the Lance Armstrong "Live Strong" bracelet but this one has a different message and was inspired by a different hero.
I'm wearing the bracelet because a few weeks ago, before speaking to 1,600 Northwestern Mutual financial representatives, I met the one person who I was supposed to meet who told me a story about his son Connor that I was meant to hear... and share.
Tait Cruse, a managing partner in Dallas, told me about his amazing team at work, his incredible wife named Joy and his four children including his seven year old son named Connor who had been diagnosed with stage 4 Neuroblastoma and by all accounts shouldn't be here. Yet, he is here in spite of multiple surgeries and cancer treatments and hundreds of visits to the doctor.
"Connor's an inspiration," Tait said. "Through it all he hasn't complained once. Like you write in your books, he stays positive and he inspires everyone around him to stay positive. As a family we just keep on believing and people keep on praying and miracles keep on happening. The cancer just stopped spreading one day and now we’re hoping it goes away."
Tait gave me a bracelet to wear and asked me to join him, his family and thousands of people who are praying for Connor. Now I wear a bracelet, my kids wear a bracelet and their friends wear bracelets.
Will wearing a bracelet heal Connor? No one knows for sure. But I do know that when I'm having a tough day, I look down at the bracelet on my wrist and think of Connor and say to myself, "If Connor isn't complaining then how can I?" I think of his courage and it inspires me. And throughout my day I'll stop for a minute and pray for him and smile at the thought that thousands of people are doing the same. I'm just one of many who have come to live their lives with more faith and hope as a result of meeting or learning about Connor.
And my hope is that he will inspire you too. To be thankful more and complain less. To focus on what you have rather than what you don't. And to invest your energy in what matters and stop wasting it on the things that don't. Make each day count. At home, at work and at school.
To be inspired by Connor, request a Connor prayer bracelet and join Team Connor visit www.connorcruse.com.
I'll also be doing a book tour this summer for my new book The No Complaining Rule: Positive Ways to Deal with Negativity at Work and because of Connor’s inspiration we'll be raising money for Pediatric Cancer. If you would like to be involved email us at Team@JonGordon.com.
Sending Positive Energy Your Way!
-Jon
For those of you interested in Jon Gordon, his website is www.jongordon.com. I'll let you know the details of his trip to Dallas. Come meet him, buy his book and support Pediatric Cancer! Yeah!
"Serve the Lord with gladness." Psalm 100:2
No complaining Allowed!
Thanks for all your prayers,
Joy Cruse
Friday, April 18, 2008 2:11 PM CDT
Thank you, Aunt Christie, for updating the website last week. None of you know how much Christie has done for Connor and our family during the last three years. She created the connorcruse website, the teamconnor website (which is almost ready for viewing) and the teamconnor newsletter, too. Her fresh perspective and amazing ideas are the very backbone of teamconnor. Her talent and intelligence always amaze me. She can take on any role she decides to...gymnastics coach, family counselor, Chief Operating Officer, website designer, mom, wife, etc. We love you and can never thank you enough.
As she said in her journal entry, we are so grateful to all of you for your continued prayers and support for Connor. I know that God is listening and answering our prayers. I agree with Christie, that Connor does and will have some amazing "trickle down" effects from all of your prayers. It will be fun to watch it all take form in his life.
After the last round of Connor's scans showed stable disease, we e-mailed our doctor with some questions. Basically, we asked her about the direction we should take for Connor. Do we stay on this easy path or try for something harder and more aggressive? Our goal is to eventually get Connor off of chemotherapy/treatment. We're not sure when that will be, but what is the best path for that goal? Could stable scans be indicative of dead/mature cancer or is that not a possibility? We've had several different opinions on this. Are we safe to stay on this course or are we taking too easy a path to finish off any disease that is left over? Her answers are posted below.
2) When evaluating MIBG changes-- you can have MIBG uptake in neuroblastoma lesions that have matured and are no longer malignant. This does make things slightly more complicated for patients like Conner.
3) What's next? That is a great question. There really is no data about how long you can keep patients on this type of therapy. By the time we get closer to 1 year of Zometa/Cytoxan, hopefully Dr. Russell will have more data about any bone changes that have been seen in patients on therapy for longer periods of time. Based upon those results and his scans, we may decide to either stop Zometa all together, move to an every 2-3 month infusion, or continue with the current schedule.
4) As far as cytoxan, if he is not having any side effects, I would recommend we continue at the same dosing schedule. If we were to consider stopping all together-- not an unreasonable option in a patient with stable disease for more than 1 year-- I would feel better if we had a tissue diagnosis showing maturity of the disease. Dr. Russell does have a patient who had been referred to hospice care for metastatic neuroblastoma-- who was re-biopsied after being "fired" from hospice 2 years later. Her metastatic disease had matured and the lesions (still seen on bone scan and MIBG) have remained stable as she has continued to grow.
5) My concern with many of the newer agents at this time would be the increased risk for toxicity with little potential to improve his current quality of life. However, nothing at this point is written in stone...
So, you see we still need your prayers for God's wisdom and guidance. Connor's path/protocol is not yet written. We are forging our own new path, because there are not many available/proven treatments/protocols for Connor's specific diagnosis...stable refractory disease. PRAY THAT WE WILL KNOW AND FOLLOW GOD'S GUIDANCE FOR CONNOR. Thanks again for your continued prayers.
Please pray for our friend, Grayson. His follow-up scans showed a new spot and they are not sure what it means... benign cells or relapse? They are waiting for some second/third opinions. (www.caringbridge.org/visit/graysonbradshaw)
Thanks,
Joy Cruse
Tuesday, April 8, 2008 8:47 PM CDT
Tait and Joy are out of town, at the Northwestern Mutual Managing Partner Conference. Joy has asked me to fill in for her, and write the weekly update.
For those of you who may have missed the scan report, it found no change.
I have maintained this website for almost three years now and it has been a privilege. I have thoroughly enjoyed witnessing and publishing the power of Connor's story and God's work in him; the relationships built and used by God that have been found here; and being part of a miracle.
If, on that May evening at the hospital almost three years ago, you had asked the doctors the odds of Connor skiing with abandon ever again like he is in the photos above, they would have declined to answer. The odds were very, very poor.
And while we do not have remission, we have Connor with us to enjoy and watch grow. There's no explanation for the bizarre state of his cancer. He has cancer, it is not dead, yet he is essentially thriving. I sometimes wonder if there is a daily battle going on in Connor, at a microscopic level. Are there entire armies fighting, one evil (cancer cells) and one good, his body's defenses, armed with chemotherapy, led by the hand of God, every day, every hour, every minute?
And if that's the case, and by all reports, that IS the case, what role has prayer played in this? How many of you have "supported the troops" in Connor's little body by lifting him up and calling on the Lord daily for this battle where his life hangs in the balance?
Probably thousands of people praying hundreds and hundreds of prayers. There is no way to express the awe that so many people would faithfully pray for Connor day after day.
I also often wonder what becomes of a young boy who has been prayed for so much. What effect do thousands of prayers for one person have on them? Besides keep him alive? I cannot help but think he is being prepared for something special in God's plan.
In summary, I want to humbly thank all of you for standing in the gap, day after day. And to say I hope you will continue so we all can see what God has in store for Connor. Don't let up!
Finally, my brethren, be strong in the Lord and in the power of His might. Put on the whole armor of God, that you may be able to stand against the wiles of the devil. For we do not wrestle against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this age, against spiritual hosts of wickedness in the heavenly places. Therefore take up the whole armor of God, that you may be able to withstand in the evil day, and having done all, to stand. Ephesians 6:10
Christie (Tait's sister)
Thursday, March 27, 2008 9:12 PM CDT
Hello to everyone!
As the Dad of a "sick child" and especially Connor who does not look, act,feel, much less think he is sick is a blessing.
As the husband of a beautiful wife who can write like Joy much less fight this disease like Joy is a blessing.
As the father of MacKenzie, Carson and Mason who have been so good these last 34 months is a blessing.
As the employer and Managing Partner to so many at Northwestern Mutual is a blessing.
I stand here as a friend of so many who write, encourage, donate, and pray is a blessing.
Today, where ever you are with work, home, kids, marriages, relationships, jobs, money etc.
COUNT YOUR BLESSINGS TONITE
We are!! Without our Faith,Family, and Friends this nightmare would have been so much more
Psalm 7:17 "I will give thanks to the Lord
because of his
righteousness
and will sing praise to the
name of the Lord Most
High"
All the Best,
Tait
Friday, March 21, 2008 4:00 PM CDT
We are back from Houston and the trip was short and sweet. We stayed with Cousin Julie and we are thankful for her hospitality and support. Connor enjoys going to Houston because he loves staying with Julie and our friends, the Reeters. He also loves the video games at the hospital. The cancer clinic there sure is fun.
We're still awaiting results of the scans. I'll post them as soon as we know. Maybe Monday? Thank you to everyone who has been praying for us and Connor's scans this week. We definitely felt your prayers and God's presence all week and specifically in Houston. Please continue praying for those great scan results!
I want to wish everyone a Happy Easter. I love this Easter song, written by Nicole Nordeman.
Why
We rode into town the other day
Just me and my Daddy
He said I'd finally reached that age
And I could ride next to him on a horse
That of course was not quite as wide
We heard a crowd of people shouting
And so we stopped to find out why
And there was that man
That my dad said he loved
But today there was fear in his eyes
So I said "Daddy, why are they screaming?
Why are the faces of some of them beaming?
Why is He dressed in that bright purple robe?
I'll bet that crown hurts Him more than He shows
Daddy, please can't you do something?
He looks as though He's gonna cry
you said he was stronger than all of those guys
Daddy, please tell me why
Why does everyone want him to die?"
Later that day the sky grew cloudy
And Daddy said I should go inside
Somehow he knew things would get stormy
Boy was he right
But I could not keep from wondering
If there was something he had to hide
So after he left I had to find out
I was not afraid of getting lost
So I followed the crowds
To a hill where I knew men had been killed
And I heard a voice come from the cross
And it said, "Father, why are they screaming?
Why are the faces of some of them beaming?
Why are they casting their lots for My robe?
This crown of thorns hurts Me more than it shows
Father, please can't You do something?
I know that You must hear My cry
I thought I could handle the cross of this size
Father, remind Me why
Why does everyone want Me to die?
When will I understand why?"
"My precious Son, I hear them screaming
I'm watching the face of the enemy beaming
But soon I will clothe You in robes of My own
Jesus, this hurts Me much more than You know
But this dark hour I must do nothing
Though I've heard Your unbearable cry
The power in Your blood destroys all of the lies
Soon You'll see past their unmerciful eyes
Look there below, see the child
Trembling by her father's side
Now I can tell You why
She is why You must die"
"For God so loved the world, that He gave His only begotten son. That whosoever believes in Him, should not perish, but have everlasting life."
John 3:16
Joy Cruse
Friday, March 14, 2008 5:15 PM CDT
We are officially on Spring Break now. We have a wonderful week of sleeping in and fun activities to look forward to. The only break from our fun will be the trip to Houston for Connor and me. His scans will be next Wednesday and Thursday. PLEASE PRAY FOR GREAT SCAN RESULTS... STABLE DISEASE OR IMPROVED.
As I was speaking with the PCA Kindergarten Mom's Prayer Group yesterday, we were talking about the scans next week. One of the moms asked how I was doing. Was I nervous? Do I get scared before the scans? I told them that God seems to give me an unusual sense of peace. Granted there a few moments (especially in NY) when I felt afraid, but overall, it is inexplainable the peace that I feel.
PEACE. The highly sought after, ever illusive PEACE. WE all want it, but it can be so hard to find. Most often it can't be found in our circumstances or it can't be found in someone else's words. Our busy, hectic schedules are not conducive to peace. Many people search their whole lives for peace and they often look in the wrong places. They try to find it through meditation, yoga, tranquility, knowledge or medication. Through this whole journey with Connor, I have found that there is only one true source of PEACE for me... Jesus.
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 54 :6-7
"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid."
John 14:27
"Hold Me Jesus" by Big Daddy Weave
Sometimes my life just don't make sense at all
When the mountain looks so big
And my faith just seems so small
So hold me Jesus, 'cause I'm shakin' like a leaf
You have been King of my Glory
Won't you be my Prince of Peace
When I wake up in the night I feel the dark
It's so hot inside my soul
I swear there must be blisters on my heart
So hold me Jesus, 'cause I'm shakin' like a leaf
You have been King of my Glory
Won't you be my Prince of Peace
Surrender don't come natural to me
I'd rather fight you for something I don't really want
Than to take what you give that I need
And I've beat my head against so many walls
I'm falling down, falling on my knees
God please
And the Salvation Army band is playing this hymn
And your grace rings out so deep
It makes my resistance seem so thin
So hold me Jesus, 'cause I'm shakin' like a leaf
You have been King of my Glory
Won't you be my Prince of Peace
Would you please pray for peace for the Barr family. Their son, Peter died a couple of days ago. He had a brain stem tumor. He was seven. His website is www.caringbridge.org/visit/peterbarr. Also, pray for Avery, age 3. She is in ICU with many problems. Her website is www.caringbridge.org/visit/averygraceakeman. Thanks for your prayers.
Joy Cruse
Thursday, March 6, 2008 12:01 AM CST
Our ski trip was amazing! The kids had a great time. Already, they are probably better skiers than Tait and I are. Considering how sick Connor was the last time we skied, it was wonderful seeing him enjoy himself so much. He loved skiing from the first moment on the slopes (as did the other kids). After our last ski trip, we weren't sure Connor would ever see the mountains again or even ski again. We are so thankful that we had this opportunity as a family.
Being in Whistler was like being in the middle of a Christmas card. It was so picturesque! Every tree in Whistler village had Christmas lights on them. It snowed almost every day we were there. Seeing all the beauty around me reminded me of God's blessings.
This trip included several people from Tait's office (it was a reward for a contest), and the wives spent one morning just getting to know each other better. During this time, it was wonderful to hear how God has touched everyone's life, whether by directing them to a new path or showing them a renewed purpose for their lives. Some stories included healing, restoration and promise. All of this just reminds me that God speaks to us in all situations and at all times, if we would just recognize His voice over the clamor of this world. The snowflakes swaying beautifully downward amidst the fantastic mountains are a sign of his majesty, and the stories shared that morning were signs of his faithfulness and love towards us all.
None of you will be surprised that my experience in Whistler reminds me of a song. It is from Mandisa (remember her from American Idol 2 or 3 seasons ago). it is called..
GOD SPEAKING
Have you ever heard a love song that set your spirit free?
Have you ever watched a sunrise and felt you could not breathe?
What if it's Him?
What if it's God speaking?
Have you ever cried a tear that you could not explain?
Have you ever met a stranger who already knew your name?
What if it's Him?
What if it's God speaking?
Who knows how to get ahold of us?
Get our attention to prove He is enough
He'll do and He'll use whatever He wants to
To tell us, "I love you."
Have you ever lost a loved one who you thought should still be here?
Do you know what it feels like to be tangled up in fear?
What if He's somehow involved?
What if He's speaking through it all?
His ways are higher.
His ways are better.
Though sometimes it's strange,
What could be stranger than God in a manger?
Who knows how to get ahold of us?
Get our attention to prove He is enough
Who knows how to get ahold of you?
Get your attention to prove He is enough
He'll do and He'll use whatever He wants to
To tell us, "I love you."
I pray we will continue to hear His voice. "When He has brought out all His own, He goes on ahead of them, and His sheep follow Him because they know His voice." John 10:4
Thanks for your continued prayers. Connor's scans are in a couple weeks. PLEASE PRAY FOR GREAT RESULTS FOR ALL HIS SCANS. ALSO, PRAY THAT WE ARE ENCOURAGING AND OFFER HOPE TO THOSE WE MEET ALONG THIS JOURNEY.
Please pray for our friend, Payton. She is 1 1/2 and she was diagnosed with Wilms Tumor. Thankfully, it is Stage 1 and the tumor on her kidney was surgically removed. She will undergo light chemo to make sure the cancer does not return. Pray for strength for her family, too.
CONGRATS TO THE LOMEGA LADY RAIDERS! THEY HAVE REPEATED THEIR OK BASKETBALL STATE CHAMPIONSHIP TITLE! GREAT JOB GIRLS! YOU HAVE MADE YOUR HOMETOWN PROUD, CONTINUING THE LOMEGA BASKETBALL LEGACY.
Joy Cruse
Thursday, February 28, 2008 5:52 PM CST
We are packing for our ski trip this week. We will leave tomorrow to hit the slopes in Whistler, Canada. The kids are so excited. We have not been skiing since March, 2005, just a few weeks before Connor was diagnosed. This will be bittersweet seeing him on the slopes again. Last time, Connor was very whiny, frustrated and easily tired. At the time, we were baffled. On May 15 (six weeks later), we found out the reasons why he was acting that way. We hope that this experience will be 100% better. We are looking forward to seeing many, many smiles from Connor and his siblings. Please pray for our safe travels.
My friend, Kathy Qualy, showed me the following story when we were in San Antonio together. The story is written in 2 Kings 20:1-6
To paraphrase most of the story, the prophet, Isaiah, was sent by the Lord to tell King Hezekiah that he was going to die. He should get his house in order because he had a short time to live.
King Hezekiah then pleaded with the Lord, saying in verse 3, "Remember, O Lord, how I have walked before you faithfully and with wholehearted devotion and have done what is good in your eyes." And Hezekiah wept bitterly.
The Lord responded to him in verse 5. "I have heard your prayer and seen your tears. I will heal you."
Isn't that wonderful??!!! I know our prayers are being heard and are being answered every day. God sees our tears and knows our hearts. THANK ALL OF YOU SO MUCH FOR YOUR CONTINUED PRAYERS. THEY MAKE ALL THE DIFFERENCE!! GOD IS LISTENING. PLEASE CONTINUE TO BE FERVENT IN YOUR PRAYERS FOR CONNOR!
Thanks, Kathy, for sharing that bible story with me. Tell you husband, John, he did a great job speaking at the Prayer Breakfast at the Southern Regional Meeting. He is so right, that everyday we should love God more and know Him more!
I have to give a big cheer for the Lomega Raiderettes (my home team)! They are in the OK State Basketball Tournament again this year! Good luck trying to reclaim that Championship Ball!!!
Joy Cruse
Wednesday, February 20, 2008 2:13 PM CST
I hope you all had a wonderful Valentine's Day last week. Feel the love, right? I actually got to spend Valentines Day with Tait in San Antonio. Northwestern Mutual was having their Southern Regional Meeting there last week and Tait was accepting an award for best NMFN office in the Southern Region. I was glad to be there and be his cheerleader.
With everything we've been enduring these past 33 months, God has truly blessed Tait's business. We are grateful that we have not needed to worry about that. The people at his office are incredible people and they've carried the torch for Tait when he couldn't be there due to Connor's illness. I want to thank all of you who have helped Tait during this journey, through words of encouragement and support.
Thinking of Valentine's Day and LOVE, I can't help but quote some verses from
I Corinthians 13.
"Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. IT ALWAYS PROTECTS, ALWAYS TRUSTS, ALWAYS HOPES, ALWAYS PERSEVERES, LOVE NEVER FAILS."
Wow! That's powerful to me. Love always hopes, always perseveres. It never fails. What an outstanding promise. "Perfect love casts out all fear."
I John 4:19 What a strong force!
My friend, Jeff Reeter, gave me a visual picture of this kind of love. He said if you were asked to walk on a tight wire about 300 feet off of the ground, would you do it for $1,000,000? I said no, I would be too afraid. He said, what if your child was on that wire, would you walk on the tight wire to save him? Of course! Love is stronger than my fear. It casts out fear!
Third Day sings about Love in their song, "I Believe."
"Give me something that I can believe
And then I'll share it with
the world for everyone to see
Take away the darkness, all the pain and sadness
I know it's you that put this light inside of me
I believe in a faith that's strong
I believe in a hope that carries on
I believe in these things and more
Most of all, most of all
I believe in love
If I had the strength to move a mountain
Would you be amazed by all of my abilities
I guess it would not mean
much if I didn't have love
And this is what I really
want you all to see"
Happy Belated Valentine's Day!
Please continue to pray for Connor. His scans are coming up next month. He feels great, besides a little cold and cough. We're expecting some great results this time.
Joy Cruse
Tuesday, February 12, 2008 10:25 PM CST
"I will extol the Lord at all times; his praise will always be on my lips.
My soul will boast in the Lord; let the afflicted hear and rejoice.
Glorify the Lord with me; let us exalt his name together.
I sought the Lord, and he answered me; he delivered me from all my fears."
Psalm 34:1-4
Extol the Lord at all times. That's a tall order. Right now, when things are running smoothly, it seems pretty easy to do. We're enjoying some normalcy. Connor is feeling great and his disease is stable. He just graduated from his speech therapy with Miss Robin. (Robin has been working with Connor for over a year because of his hearing problems. She did an awesome job! Thanks, Robin. We love you and your company, North Texas Speech Therapy.) Praising Him right now is not difficult.
But as I look back over the last 30 months, I can't say that it was always this easy. Sometimes we just felt like we were in a pit, a pit of despair. It's when we were in those times, that extolling the Lord was much more challenging; it was a bigger test of faith.
I like the words from Frances J. Roberts in her book, "On the Highroad of Surrender."
"You will find courage in the hour of calamity if you have disciplined your spirit to rest always in the Lord and to praise continually regardless of circumstances. Any lesser plane of thinking is not only disquieting to the soul but will also open the door to a host of sins. Anger, resentment, petulance, bitterness - none of which can live in an atmosphere of praise - will thrive if the eyes of the soul are diverted to the natural situation and are not fixed on Christ. He deliberately rewards them that adore Him with mercies denied the self-concerned.
Relinquishment of burdens and fears begins where adoration and worship of God becomes the occupation of the soul."
I just love that. It reminds me to keep my eyes fixed on Him in all circumstances. It's just like this song by Selah, "I Bless Your Name," reminds us, that praising him can break the chains of many strongholds.
"In prisoners' chains
With bleeding stripes
Paul and Silas prayed that night
And in their pain began to sing
Their chains were loosed
And they were free
I bless Your Name
I bless Your Name
I give You honor, give You praise
You are the Life, the Truth, the Way
I bless Your Name
I bless Your Name
Some midnight hour
If you should find
You're in a prison in your mind
Reach out and praise
Defy those chains
And they will fall
In Jesus' Name
Repeat Chorus"
I guess I'm writing this journal entry to remind myself to always be thankful and grateful. With our daily routine being so easy now, compared to the last 2 years, we can become complacent and not thank Him enough for our current status. I always want to remember how far He has brought us and how He has remained faithful in all circumstances.
Thanks for your prayers. Connor's scans are coming up next month. Pray for great scan results.
Joy Cruse
Thursday, January 31, 2008 4:37 PM CST
Connor is still feeling great. We feel very blessed that he can continue this normal lifestyle. We will continue to be grateful for everyday. I read other websites of children who fight so hard to win their own battles, but some of them face setbacks like relapse or continued growth of the cancer. Some lose their battles on earth and are angels now.
As I continue to read these websites, two thoughts come to me. First of all, it makes me so grateful that Connor is stable right now and feeling so well. I get down on my knees every night and thank God for that miracle. WE ARE SO BLESSED. My second thought is "I hate Cancer!" It makes me even more determined to do whatever I can to stop this horrible disease. You cannot read one of these website journal entries and not want to fight with and for these children. If you read any of the journal entries, you will understand why Tait and I formed Team Connor, why we want to help eradicate this disease.
I've copied below part of a journal entry from Isaac Lieser's website at www.caringbridge.org/visit/isaaclieser. He lost his battle with neuroblastoma a week ago and his mother's journal entry is so moving. After reading this, you will plainly see why we are so dedicated to a cure. I want to warn you, it will not be easy to read.
"This week has been hard. Monday the home care services that provide the leased out pump for Isaac's feeds and the company that provided the blood pressure machine came to get their supplies. Everything is gone. No more pumps, flushes, needles, dressings, nothing, it's all gone. I should be lying next to him right now listening for pumps or preparing to care for him as he gets tummy sick, but it's all gone now. I'm glad, very glad Isaac has no more pain, but I miss him. He IS still here and he IS still my perfect child, but I miss him physically. Please don't refer to Isaac as WAS because he will forever remain "IS" in my heart. I feel like the days should get easier, but they only get harder, my pain more raw than the days before. I smile for my kids and hug Dominic and Jayden as I send them off for their day and Keegan is such a blessing with me all day, but so much is missing. ..... I'll continue on for my other children in hopes that it will get easier, but all I can think about right now is getting through life.... I'm sad for my kids and husband. I feel they not only got cheated out of time with their brother/son, but now their stuck with a depressed mom/wife. I know Isaac is with HIM right now having a wonderful time, but my pain remains. Everyone has gone home, the funeral is over and people lay down their heads at night and go to sleep, but not me. When I lay down my head at night and all through the day my tears continue, my pain just as raw as the day GOD called Isaac home."
Please pray for Isaac's family. If you feel as moved as we do to make a difference, please join Team Connor in our fight against cancer, specifically neuroblastoma. www.active.com/donate/teamconnor
Sincerely,
JOY
Thursday, January 24, 2008 4:00 PM CST
We're having a great week in the Cruse household. Yesterday, Connor and Carson got to meet Troy Aikman and Roger Staubach at a Photo Shoot for the Children's Cancer Fund. This Organization sponsors a Fashion Show every spring where cancer patients undergoing treatment at Children's Medical Center are the models. Connor was in the Show the last two years, and this year he'll get to be one of the survivors that walk out on the stage at the end of the show. It's a really inspiring show for the patients and their parents, as well as a great opportunity to raise funds for pediatric cancer research. The show will be March 28th this year and we can't wait.
A couple weeks ago, Natalie Grant sang at our church and she was great. The words from many of her songs speak to me (as you can tell by the number of her songs I've posted on Connor's website). She spoke specifically about one of her songs called "In Better Hands Now." She told us how the song originated. A family friend (a 5 or 6 year old boy) was visiting his grandparents and they had a bonfire going. The boy caught fire and was burned over the majority of his body. He was not expected to live, but against all odds, he is still alive. She said that God spared his life for a reason. He still has a purpose to fulfill in his life. God is still using him in ways that we cannot conceive.
I look at Connor's life and that's exactly how I feel. The doctors would surely agree that Connor was not expected to live. His neuroblastoma was very advanced and the tumors would not be able to be resected completely unless they shrunk quite a bit (which didn't happen). Yet, here we are, and Connor is a walking miracle. So, I know that God has plans for him still. I pray all the time that God would honor us with the opportunity to tell anyone and everyone how God healed our son. Maybe that will be the purpose for Connor's life. Obviously, God is ALREADY working out His purpose in Connor's life. We will continue to watch God's purpose worked out through his/our lives during this journey.
"In Better Hands Now"
It’s hard to stand
On shifting sand
It’s hard to shine
In the shadows of the night
You can’t be free
If you don’t reach for help
And you can’t love
If you don’t love yourself
But there is hope when my faith runs out…
Casuse I’m in better hands now
Chorus:
It’s like the sun is shining
When the rain is pouring down
It’s like my soul is flying
Though my feet are on the ground
So take this heart of mine
There’s no doubt
I’m in better hands now
I am strong
All because of you
I stand in awe of
Every mountain that you move
I am changed
Yesterday is gone
I am safe
From this moment on…
And there’s no fear when the night comes around
I’m in better hands now
Chorus
It’s like the sun is shining
When the rain is pouring down
It’s like my soul is flying
Though my feet are on the ground
It’s like the world is silent
Though I know it isn’t true
It’s like the breath of Jesus
Is right here in this room
So take this heart of mine
There’s no doubt
You can’t be saved
If you’re not reaching out for help
Please pray for a family that has just lost their son to neuroblastoma. HIs name is Isaac and he became an angel yesterday. His website is
www.caringbridge.org/visit/isaaclieser.
Thanks for your continued prayers.
JOY
Thursday, January 17, 2008 10:11 PM CST
Thanks for checking in on Connor. He's still feeling great and enjoying school. He's getting ready to start back with gymnastics. He had to quit gymnastics at Uncle Tom's gym when he was diagnosed, so he's so excited to start again.
Connor's teacher has been tutoring him a couple days a week after school to help him catch up with things he missed last year due to his treatment. I'm so impressed with him. He is really improving quickly. I'm SO GRATEFUL that all that chemotherapy did not damage his thinking/learning abilities. Praise God!
Also, I forgot to mention that Connor's hearing was tested at school the other day and he PASSED! Can you believe it? That just confirms what the ENT found when he tested Connor. What a miracle! He doesn't even wear his hearing aides in class now. He still has some hearing loss, but as long as he sits in the front row, he can hear his teacher well enough. I guess "permanent hearing loss" isn't much of an obstacle to God. He just continues to baffle those doctors.
I was listening to our local radio station a few days ago (after the Cowboys loss) and they were talking about how God can take something that seems horrible at the time and redeem it for something good. Listeners were calling in and giving their examples of how that has happened in their own lives. I received an e-mail from Dr. James Denison that speaks of the very same thing. I'll post it here.
"If you live in Dallas, the sky is falling and all hope is gone, for our beloved Cowboys were upset in epic fashion last night. Today's Dallas Morning News is filled with recrimination--Romo was "just average when he needed to be great," one sportswriter complains. The defense couldn't stop the Giants when it counted, another observes. Stupid penalties cost us the season, we're told. The team is sending a record 12 players to the Pro Bowl, but none to the Super Bowl.
Now open today's New York Times, and you'll learn that the sun is shining in the heavens and all is right with the world. The Giants are sending only one player to the Pro Bowl, but all their players have a chance to go to the Super Bowl. "The Cowboys may have better players, but the Giants have the better team," we're told. The game was not lost by the Cowboys' offensive futility but won by the Giants' defensive strength: "With a hardening shell of resiliency, they pierced together three defensive stands in the fourth quarter" to gain the victory.
So much of life is perspective. As a Cowboys fan I'm tempted to write in frustration about our team's horrific failure. Were I a Giants fan, I would want to write in exultation about our team's stunning, never-give-up-hope victory. If you're neither, you're just waiting for me to write something relevant to your life and soul this morning.
Life is filled with winners and losers. A falling dollar means a stronger euro. The primaries have been good for John McCain but bad for Mitt Romney. Rain is good for the farmer and bad for the golfer. When your computer crashes you lose time but your computer repair guy makes money. For someone to win, someone has to lose.
Except with God. He redeems everything he allows or causes. He can use both a bull and a bear market for his glory and our good. Whoever wins the presidential race can serve God or ignore God, but the Creator will still rule his creation. His brothers could sell him into slavery, but Joseph would later assure them, "You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives" (Genesis 50:20). The only way to prove that angels can stop lions is to follow God into their den. The only way to know that God can stop a flooded river is to walk into that river by faith. The only way to know that God can help you is to trust him today.
So give your guilt or grief, struggle or sin, decision or dilemma to your Father. He's ready to redeem it for his glory and your good."
Isn't that awesome and so true? God can truly use Connor's situation and turn it into something good for Him. Only God can redeem something as horrible as the word "neuroblastoma."
"And we know that in all things God works for the good of those who love Him, who have been called according to His purpose." Romans 8:28
Joy
Thursday, January 10, 2008 9:16 AM CST
Thanks for checking on Connor. He's feeling very well. Starting school this week was bittersweet for the kids. They wanted to see their friends at school, but they weren't ready to give up all their free time. Oh well. That's life. Do what ya gotta do.
Connor is still on the same regimen as he's been on for the last seven months. PLEASE PRAY THAT THIS TREATMENT WILL MAKE A DIFFERENCE. I'd really love for the bones to stop lighting up on the MIBG scan. The doctors in Houston said sometimes it takes 9 months to a year to see that happen. We'll do another scan in March. Because this treatment is so easy on Connor, I'm hoping to stay on it for awhile, so good results would be a good reason to stick with it. PLEASE PRAY FOR GUIDANCE FOR OTHER NEW TREATMENTS FOR CONNOR; SOME THAT HE CAN USE IN CONJUNCTION WITH HIS CURRENT REGIMEN. PRAY THAT WE'LL BE A SOURCE OF COMFORT AND ENCOURAGEMENT TO OTHERS.
I was reading II Corinthians last night and I came across this passage and it reminded me of our situation.
"We were under great pressure far beyond our ability to endure, so that we despaired even of life. Indeed in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many." 2 Corinthians 1:8-11
Thank you so much for your prayers! We are so dependent on them. Please pray for our friend, Ales Podeszwa, as he is getting his scans this week in Houston. Praise for our friend, Alaina! She's still "No evidence of disease!" Yeah!!!
Thanks again for your faithfulness to Connor and our family.
Joy
Wednesday, January 2, 2008 8:45 PM CST
Happy New Year to everyone! I hope 2008 brings you many blessings. I hope 2008 brings us closer to a cure for Neuroblastoma and Connor closer to being disease free.
I've been speaking to some other NB parents lately and reading about some new promising treatments coming available in the future. PLEASE PRAY FOR GOD'S GUIDANCE AS WE NAVIGATE THROUGH THESE MURKY WATERS OF POSSIBLE TREATMENTS. It's hard to know which direction is best for Connor. Which one will work best? You don't know when it is still in a trial basis and there is no evidence to show whether or not it will work. it's so hard to not get our hopes up when we hear about something new, but we also know that nothing is a sure thing. Everyone has there own opinion about what will work best. The only thing we can be sure of is it is all in God's hands.
We're enjoying our time off from school and work, having play dates and family time. We're praying for a wonderful '08. I actually heard a song a few weeks ago that is my prayer for '08. My nephew Landon was singing it at his sister, Sheena's wedding. As I stood there and listened to the words of the song that was meant to be Sheena and Dustin's promise for their new lives together, it resonated fully for me, too. I thought it was a new praise and worship song, but Landon told me that it was an old hymn.
"Take My Life, and Let It Be"
"Take my life and let it be
Consecrated, Lord, to Thee,
Take my moments and my days;
Let them flow in ceaseless praise,
Let them flow in ceaseless praise.
Take my hands, and let them move
At the implulse of Thy love.
Take my feet, and let them be
Swift and beautiful for Thee,
Swift and beautiful for Thee.
Take my voice, and let me sing
Always, only, for my King.
Take my intellect, and use
Every power as Thou shalt choose,
Every power as Thou shalt choose.
Take my will, and make it Thine;
It shall be no longer mine.
Take my heart, it is thine own;
It shall be Thy royal throne,
It shall be Thy royal throne.
Take my love; my Lord, I pour
At Thy feet its treasure store.
Take myself, and I will be
Ever, only, all for Thee,
Ever, only, all for Thee.
Happy New Year!
Joy
Monday, December 24, 2007 7:38 AM CST
Merry Christmas to everyone! We hope you are having a blessed Christmas season. We are enjoying our time with family. It is such a cherished time to spend Christmas with your loved ones and we're grateful that we can spend our time with family this year.
Please pray for Shelby's family. She's the 2 year old little girl with leukemia that we have been praying for. She passed away last week and I know her family needs our prayers. (www.caringbridge.org/visit/shelbyr) At this time of year, I know it is important to pray for our friends who have lost loved ones in 2007. It is such a hard time to be without our loved ones. Let's remember them in our prayers.
I'll leave you with this Christmas song by Natalie Grant.
"One Child"
The seed, it grows and somehow becomes a life
It moves, she knows that her baby has arrived,
She's so scared, but she's so blessed
She lays down her fear for the hope at her breast for she knows...
CHORUS:
One million chains could never hold back this moment in time
One thousand dreams could never dream what this moment truly means
Heaven and earth, they cradle the infinite Joy born on this night
For it only takes one Child to forever change the world
He stands beside her, he'd share her pain if he only knew how
He whispers 'I love you' as he gently strokes her brow
He's so scared, but he's so blessed
There's a thundering pride pounding deep in his chest
For he knows...
CHORUS
Christ is born, we are blessed
Every knee shall bow and every tongue shall confess
That we know..
CHORUS
This Baby cries and for the first time
The world hears the voice of God weep
Mary sings a lullaby
As the Hope of the nations gently falls asleep
She knows this is the one Child
To forever change the world.
Merry Christmas!
Joy Cruse
Thursday, December 13, 2007 4:33 PM CST
We are still rejoicing about the good news on Connor's scans. Stable and no new growth are words we like to hear. We know that the results could have been devastating. So, we are just looking forward to enjoying this Christmas season with our whole family. We hope to cherish every moment we've been given this season and appreciate every blessing.
At first glance, this trial seems like a curse or a dark valley where no light can shine. But as we continue on this difficult, dark journey, we have been able to see so much light... light in the forms of guidance, love, support, answered prayers, peace, beauty and joy in the midst of suffering. It's as if life is more vibrant now. Many things hold more significant meaning to me. God's peace, joy, faithfulness and love towards me and my family, thankfulness for my many blessings and each new day, being content in all situations, and total reliance on God are just a few things that resonate fully for me now. I've always known these truths, but now I experience/live them daily. "I once was blind, but now I see."
It's just like these words from Natalie Grant in her song, "You Move Me."
I stand in awe
That You know my name
Just a glimpse of Your love for me
And now I am changed
Because You, showed me how
To walk a different way
I have peace like I’ve never known
I am living
You move me
Lord You move me
There’s a fire burning in my soul
And it’s flowing through me
Lord You move me
Lord You move me
Now I must tell the world what I know
You move me
For too many years
I have been color blind
Only saw in shades in grey
Stuck in black and white
By grace you opened my eyes
Now I see the light
And Your love has colored my world
And makes my soul cry
Chorus
Day after day I’m amazed
That You gave Your life for me
When I think of the price that you paid
How could I not say?
You move me!
I pray that God will "move you" this Christmas season.
Thanks for all your prayers,
JOY
Tuesday, December 4, 2007 1:49 PM CST
We received the results from the scans today. The disease remains stable... no new growth. We will praise God for this good news!!! Of course, we would love to see a decrease in Connor's disease, but the fact that it is not growing is a true miracle from God! According to all the doctors we've seen, Neuroblastoma is not a cancer that remains dormant, so we'll praise God for his faithfulness to our son. Connor will continue on this current treatment and we will rescan in a few months. Thank you for your continued prayers and faithfulness!
Many people ask us how Connor is doing? Is the cancer dead or still alive? What do the doctors say? What are his odds for survival? Is it inevitable that the cancer will start growing again someday? If I would ask several different doctors these questions, they would all have different answers. Most of them would not be optimistic, for sure. The only common theme with all the doctors Connor has seen is their amazement that he looks and feels so great with the tumor burden that he still has. I think they are truly amazed that he is still here. The only answer I can say to these questions with assurance is that God holds Connor in his loving hands. Whatever the outcome, whatever plans unfold, God's love will never leave him or us. So we face each day with gratitude to God for another day with our family whole and with peace that can only come from God.
"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." Isaiah 41:10
Thanks again for your prayers and support.
Joy Cruse
Tuesday, November 27, 2007 2:51 PM CST
We're heading for Houston this afternoon. Scans will be Wednesday and Thursday. Please pray for great results, whether that be stable disease, less disease or no evidence of disease. We'll take all of the above. We just don't want progression of disease. Thank you so much for all your prayers. Your support and faithfulness are truly amazing to me!!!
Thanks for praying for Shelbi. She is doing better. She is out of ICU, but she still needs our prayers for healing.
I don't have much time to update the journal today, because we're leaving for the airport as soon as I finish this journal entry. I just wanted to finish the entry with this song from Natalie Grant. It's called "Better Hands Now."
It's hard to stand on shifting sand
It's hard to shine in the shadows of the night
You can't be free if you don't reach for help
You cant love if you dont love yourself
There is hope when my faith runs out
Cause it's like the sun is shining when the rain is pouring down
It's like my soul is flying though my feet are on the ground
So take this heart of mine there's no doubt
I'm in better hands now
I am strong all because of you
I stand in awe of every mountain that you move
Oh I am changed, yesterday is gone
I am safe from this moment on
There's no fear when the night comes 'round
I'm in better hands now
It's like the sun is shining when the rain is pouring down
It's like my soul is flying though my feet are on the ground
So take this heart of mine there's no doubt
I'm in better hands now
It's like the sun is shining when the rain is pouring down
It's like my soul is flying though my feet are on the ground
Its like the world is silent though I know it isnt true
Its like the breath of Jesus is right here in this room
So take this heart of mine there's no doubt
I'm in better hands now
I'm in better hands now in better hands now
JOY
Wednesday, November 14, 2007 2:31 PM CST
We love you, too, Louie!!! Sorry, I just had to respond to my niece's entry in the guestbook.
Connor's feeling great, eating like a hog and has more energy than anyone should be allowed to have!!! Yeah! As this Thanksgiving approaches, we can't help but be thankful for wonderful, joyful, normal days (not spent in a hospital).
Recently, a friend forwarded me a website for a little 2 year old girl fighting leukemia. Her name is Shelby Rodriguez and she is precious. As I read through her mom's journal entries, it brought back all those memories of Connor's intense treatment. When life is so harsh, you really appreciate simple accomplishments. For example, when a child shows signs that she/he is hungry and they haven't eaten in days, it can bring tears to a mom's eyes. You feel like it is a small sign that they are feeling better.
Shelby's leukemia has spread to her brain, so she has been without sight for awhile. I can't imagine the stress this puts on a family. Shelby must be feeling so scared and insecure. I just read her journal entry and she has been admitted to the hospital in Intensive Care because she's having problems breathing. They aren't sure why yet. They are running tests. Please pray for her. She needs our prayers. Her website is www.caringbridge.org/visit/shelbyr.
PLEASE CONTINUE TO PRAY FOR OUR TRIP TO HOUSTON IN A COUPLE WEEKS FOR CONNOR'S SCANS. ALSO, PRAY THAT WE CAN ENCOURAGE AND SUPPORT THOSE WHO NEED HELP ALONG THIS JOURNEY.
My niece, Lexie, shared the song "This Road," by Ginny Owens with me the other day. The words are so encouraging to me on "this road" that God has placed me on. It helps remind me that He is in control and it is not about me. It's about His Bigger Purpose!
"A million miles away from anything familiar
a thousand places I would rather be
so I choke back the tears and try to find the bright side
though I find it hard to see beyond my suffering
in my heart I know your plan is so much bigger
but this small part is all that I can see
and I believe you haven't left me here to wander
still I can't help but ponder where you're leading me
(chorus)
and I ask why this road
why this way
and this load
tell me how far must I go
till I see
till I know
why this road
A million miles away from anything familiar
what was it like to be so far from home
though you came in love
the world misunderstood you
there must have been some days when you felt so alone
but you endured, cause there was joy before you
joy that came because you sacrificed
Since you gave yourself just to spend forever with me
surely I can trust you'll lead me through my darkest times
when I ask why....
why this way, and this load
tell me how far I must go
till I see, till I know, why this road
From here I cannot see
why you'd choose this path for me
but I don't have to understand to believe
that you know why
You know why this road
why this way
and this load
you know how far I must go
till I see
till I know
why this road"
Thanks for your prayers,
JOY
Tuesday, November 6, 2007 3:27 PM CST
Thanks for checking in on Connor and our family. Connor still feels great and he's enjoying school and friends. PLEASE CONTINUE TO PRAY FOR CONNOR'S SCANS AT THE END OF THE MONTH IN HOUSTON. PRAY THAT WE CONTINUE TO BRING HOPE AND ENCOURAGEMENT TO OTHERS ON THIS SAME JOURNEY.
MacKenzie, Mason and I went to Oklahoma for my niece, Sheena's, wedding shower last weekend. It was nice catching up with family and old friends. Tait took care of Connor and Carson while we were gone. They had a great boy's weekend.
Please pray for our friend, Grayson (www.caringbridge.org/visit/graysonbradshaw). After his transplants, his scans showed a couple small spots, but the doctors believed it was nothing. On his most recent scan, it looks as if those spots have grown, leading the doctors to believe those spots were refractory NB disease and it is now growing. Pray for wisdom and guidance for his family. They are now in uncharted territory like our family, so they really need God's guidance.
I've often heard the phrase, "The Great I Am" in reference to God, but just recently it has had a deeper meaning for me. I realize that God is whatever we need Him to be at any specific moment. . That's why he is the great I AM. You can finish that statement "I am...." with anything holy, and God can be that to you. It's like a fill in the blank game. He didn't put a word after "I am," because we can finish the sentence however we need to. For those who have lost a loved one, He can be our Comforter. For those who need guidance, He can be our Counselor. If we need healing, He is the Great Physician. He can be our Strength when we are weak and he can be Peace in our turmoil. He is whatever we need Him to be!
The song, "I Am" by Nicole Nordeman explains it better than I can.
Pencil marks on a wall
I wasn't always this tall,
You scattered some monsters from beneath my bed,
You watched my team win,
You watched my team lose,
You watched when my bicycle went down again,
CHORUS:
And When I was weak unable to speak,
still I could call You by name,
and I said “Elbow healer, Superhero,
come if You can,” and You said “I am”
Only 16, life is so mean, what kind of curfew is at ten PM
You saw my mistakes, You watched my heart break
Heard when I swore I’d never love again
CHORUS:
When I was weak, unable to speak,
still I could call You by name,
and I said “Heart-ache Healer, Secret-keeper,
be my Best Friend” and You said “I am”
You saw me wear white, by pale candlelight,
I said forever to what lies ahead
two kids and a dream, with kids that can scream
too much it might seem when it’s two AM
CHORUS:
when I am weak, unable to speak,
still I will call You by name.
“Oh Shepherd, Savior, Pasture-maker,
hold on to my hand,” and You say “I am.”
The winds of change,
And circumstance blow in and all around
us so we find a foothold that’s familiar,
And bless the moments that we feel You nearer
Life had begun, I was woven and spun,
You let the angels dance around the throne, who can say when,
But they’ll dance again, when I am free and finally headed home
CHORUS:
I will be weak, unable to speak,
still I will call You by name
“Creator, Maker, Life-sustainer,
Comforter, Healer, My Redeemer,
Lord and King, Beginning and
the End, I am, yes, I am.”
Thanks for your prayers,
Joy Cruse
Sunday, October 28, 2007 4:53 PM CDT
The doctors were concerned about Connor's liver, so Connor actually had a cat scan on Thursday. The initial report was that everything looked fine, the same as the last cat scan done in Dallas. So, with grateful hearts, we are relieved that Connor has dodged another bullet. Thank you, God. Thanks for all your prayers, everyone.
JOY
Wednesday, October 24, 2007
Hope you like the new pics. They were from the Reach the Beach Relay, Connor and Mason's Birthday Party and Prestonwood Christian Academy's Homecoming Parade. MacKenzie, Connor and Carson were the Marshals of the Parade. They had a blast riding in the Bentley, throwing candy to everyone. Thanks PCA for that fun day!! As for the Reach the Beach Relay pictures, the guy running up the hill alone is our friend, Matt Russo, who planned the whole event for Team Connor. Connor had such a great day with him and Tait on the beach. Thanks again, Matt!
If you're reading this before Thursday at 9:30 am, please say a little prayer for Connor. During Connor's wellness check with the pediatrician (first wellness check since diagnosis), the doctor said Connor's liver seemed either enlarged or lower than it should be. He's never examined Connor before, so he does not know if this is "normal" for Connor. To be safe, we're doing bloodwork and a sonogram tomorrow. Please pray for a simple explanation. I'm sure this is just Connor's "normal."
Also, please pray for our friends, Kelli and Patrick Matthews. Kelli lost her father, Chuck Akers, last Thursday in a car accident. The funeral is tomorrow (Thursday). I did not know him well, but based on the lives of his children and grandchildren, I could tell what a wonderful man he was. Although he had many accomplishments in his life, they were not nearly as significant as the lives he touched. It reminds me of the verses in II Corinthians 3:2-3
"You are our letter....written not in ink,
but with the Spirit of the living God,
not on stone tablets, but on tablets of human hearts."
Just like Chuck impacted many peoples lives,it is our job to do the same. God has a purpose for our lives. We can touch so many lives, with God's help.
You put me here for a reason
You have a mission for me
You knew my name and You called it
Long before I learned to breathe
Sometimes I feel disappointed
By the way I spend my time
How can I further Your kingdom
When I'm so wrapped up in mine
In a Blink of an eye that is when
I'll be closer to You than I've ever been
Time will fly, but until then
I'll embrace every moment I'm given
There's a reason I'm alive for a blink of an eye
And though I'm living a good life
Can my life be something great?
I have to answer the question
Before it's too late
Words from "Blink of an Eye" by Mercy Me.
Thanks for your prayers. PLEASE CONTINUE TO PRAY FOR HEALING, GREAT SCANS IN NOVEMBER AND OUR ABILITY TO IMPACT OTHER'S LIVES FOR GOD.
JOY CRUSE
Sunday, October 14, 2007 4:53 PM CDT
Hello everyone,
Tait and I have been out of town for a week, so I am late updating the website. Things are actually very NORMAL at home, if you can attach that word "normal" to a young boy fighting cancer. Connor is having great fun these days. We are soaking up all that is normal around us. I feel like he's spending his days catching up on the last 2 1/2 years. He's catching up on schoolwork and sports and just plain old FUN.
Tait and I feel as if we've entered a new season in our life. For the last couple years, everything centered around getting Connor well. Everything else was secondary, so certain activities did not exist for us. Our kids were not enrolled in sports at certain times, or Mackenzie did not get to participate in some extra-curricular activities at school. Tait and I did not attend many things that interfered with Connor's schedule. Actually, our life was very simplified.
But, now that Connor's treatment is less intense, we find ourselves faced with more time, which means many new options and activities for our family. So, we have filled up our new free time. It's amazing that when we are suddenly given this gift of more spare time, we tend to fill up that time, and fill up our days. I feel as if I've joined the human masses on a super highway of rushed activities. We rush from here to there and sometimes it feels like a frantic pace. I've spoken with many other families who feel the same way, so I know we're not alone.
My point in all this is to say "Be still and know that I am God." Psalms 46:10 Chuck Swindoll says "Noise and words and frenzied hectic schedules dull our senses, closing our ears to his still, small voice and making us numb to his touch." My prayer for you and for myself is that we do not let our schedules get in the way of the most important thing ... our relationship with God, our alone time with Him. I pray that I do not lose sight of this!
Thank you for your prayers. Connor's scans are scheduled for the last week of NOvember. PLEASE PRAY FOR GREAT RESULTS. Also, continue to pray for our friends Alex, Alaina, Grayson, Patrick, Keira, Raul, Morgan and Bronson.
Joy Cruse
Monday, October 1, 2007 5:24 PM CDT
We had a great "boot camp" birthday party Saturday for Connor and Mollie Claire. What fun!!! I don't know if all the kids enjoyed the workout Captain Naz put them through, but I think most of them enjoyed it. It was a beautiful day and if they lasted thru boot camp, they got to cool off in the pool.
For the last few weeks leading up to Connor's birthday, I've been very retrospective. I can't help being SO GRATEFUL that Connor has made it to his 7th birthday. I remember at the time of diagnosis, Tait was asking the doctors questions about how the treatment would affect Connor long-term. The doctors looked at us with an all-knowing look that said lets just get through the treatment first. As Connor's treatment continued and we saw several young neuroblastoma fighters lose their battle along the way, we realized how right they were. Every day, week, month or year these children make it through is a blessing, not a guarantee.
I like what my friend Ann Podeszwa said on her son's website about this very topic..."the concept of kids getting older, our shepherding them through life’s trials, getting them off to college, and beyond… is equally as elusive (as a cure). So much talk of schools, and what kids are interested in and I motion with a smile… a triangle with my hands… you know… Maslow’s hierarchy of needs… we are still working the lowest rungs (daily basic needs)… as most cancer parents are… yes, we are fortunate as we do not want for food or shelter… but the concept of moving our kids up that triangle is scary… life has no guarantees but for many it is not so… “in your face..” so with the passing of time, we are so grateful for each new day."
The words from a song by Natalie Grant, called "Another Day" also speaks about the blessing of each new day...
"Been driving through the night
I pull up and see the lights
This is the place that I call home
I watch you as you sleep
Think of all you mean to me
Touch your face
Kiss you softly
Before I go to sleep I pray under the stars
Search my soul and check my heart
and thank God for
Another day
Another chance to love the ones I love
To find my way
To laugh, to dance
Watch the sun come up
Another day I get to live
As if
Every breath could be the last I take
I get another day
I've got a hand that I can hold
Someone who knows my soul
A safe place to lay my head at night
So why do I forget
How much I've been blessed in life
Forget what means the most to me
As I'm waking up again I feel my beating heart
So grateful that I've come this far
and thank God for
Another day
Another chance to love the ones I love
To find my way
To laugh, to dance
Watch the sun come up
Another day I get to live
As if
Every breath could be the last I take
I get another day
To make somebody smile
Go the extra mile
Take a wrong and make it right
And try to touch somebody's life
I get another day
Please remember to count your blessings and enjoy each new day. Good news for our friend, Grayson, His bone marrow came back clean. Thanks again for your prayers.
Joy Cruse
Monday, September 24, 2007 3:47 PM CDT
Things are going well at the Cruse household. We are just getting ready for Connor and Mollie Claire's 7th birthday party this weekend. Wow! Seven years old!!!
Connor is still feeling great! I keep thinking "Could the scans be wrong?" He looks and feels so wonderful, it's hard to imagine that he still has any cancer. This current treatment is a piece of cake, compared to the last 2 years of treatment. He will get another dose of Zometa this Thursday in Dallas for his bone disease. We are glad that we don't have to travel to Houston for this dose of Zometa. PLEASE PRAY THAT GOD WILL USE THE ZOMETA TO FINISH OFF THE BONE DISEASE AND HE'LL KILL ANY LAST CELL OF CANCER IN CONNOR'S BODY. I'm so humbled by your faithfulness to pray for Connor. That is the best gift he could ever get from anyone.
The first fund-raising event for Team Connor went very well. So far, we've raised $162,606. I think that's pretty awesome!!! Thank you so much for your generosity. We're overwhelmed by everyone's contributions, from selling and buying raffle tickets to donating raffle prizes and donating money. THANK YOU SO MUCH! Matt Russo's team did an awesome job at the Reach the Beach Relay, too. Thanks for including Connor in your "crossing the finish line victory dance." We are so grateful to Matt for kicking off/inspiring our first Team Connor event.
Please pray for our friend, Grayson, (www.caringbridge.org/visit/graysonbradshaw). He was NED (no evidence of disease) after his bone marrow transplant three months ago. They did a bone marrow biopsy last week and it came back with conflicting results. The Dallas pathology said that it showed Neuroblastoma cells and the California results did not show any live neuroblastoma cells. They are repeating the test this week. Pray that the BM biopsy would be clean (negative). Also pray for our friend, Morgan Snowden, (www.caringbridge.org/visit/morgansnowden). She was recently diagnosed with leukemia.
Please pray for Tait and myself to continue to have peace thru this ordeal. I'm always amazed that I wake up every morning with a sense of peace. I know this peace can only come from God and I'm so grateful for it. I think the doctors often feel like we are in denial or we don't fully understand the seriousness of Connor's situation. They just do not understand this peace that He gives us. It allows us to focus on one day at a time, not to look too far into the future. When we start thinking about all the things that could happen, our minds eventually start to worry. Thank God, that we can enjoy each day and leave the future in God's hands.
"This is the day that the Lord has made. Let us rejoice and be glad in it."
"Peace I leave with you, my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid."
John 14:27
Joy Cruse
Friday, September 14, 2007 10:48 PM CDT
The house is pretty quiet tonight, because Tait and Connor are on the east coast. They flew there today so that they can be at the Reach the Beach finish line tomorrow morning. Our friend, Matt Russo, is the last runner for our team's relay. He is going to carry Connor on his shoulders as he crosses the finish line.
We can't thank Matt, his team or his office enough for what they've done for Team Connor. By the time the numbers come in from the raffle and the on-line donations, the amount raised will be over $150,000. All of this started with Matt's idea. His generosity, love of Connor and our family, and his passion for helping all of our fellow neuroblastoma fighters is over-whelming.
That being said, I also have to thank all of our friends in Dallas and in Tait's office (Northwestern Mutual) for their love and support. With everyone's help, we sold almost $40,000 worth of raffle tickets locally. Also, thanks to everyone who donated on-line. Your generosity and willingness to help make a difference humbles me. Thank you for caring for my little boy and others like him...not just with your words but with your actions.
Next week, I'll be sending out the August newsletter with an update on the raffle and totals. We had our local raffle drawing yesterday and the other 3 local drawings are soon to follow, with the final grand prize drawing at the end of the month. I'm hoping to also have a great pic of Matt and Connor crossing the finish line together on the website soon.
Connor is feeling great, enjoying school and trying his hand at football. Thank you for your continued prayers. Please continue to pray for Connor's healing and pray that we can show God's love to so many others who are hurting because of this disease called cancer.
"Though I walk in the midst of trouble,
you preserve my life; you stretch out your hand
against the anger of my foes,
with your right hand you save me.
The Lord will fulfill his purpose for me
your love, O Lord, endures forever --
do not abandon the works of your hands."
Psalm 138:7-8
I pray that God will fulfill his purpose for us and he will not abandon the works of His hands.
Joy Cruse
Tuesday, September 4, 2007 4:43 PM CDT
We finally received the results of the scans this morning via e-mail. I didn't want to update the website until I had some new information. Also, our weekend was busy celebrating my parents' 50th Anniversary with my family.
The scans showed that nothing has changed; the disease remains stable. I admit that after the last MRI showed that 2 tumors had decreased in size, I was hoping for some more big news. After that good report and Connor's hearing improvement, I guess I just got greedy, expecting more improvements. However, we are so grateful that his disease remains stable (which is a miracle in itself). Thank you, God!!! Again, we just have to be patient and wait on his perfect timing. We will be praise the Lord in all circumstances (even when things don't happen as fast as WE want them to).
"I will extol the Lord at all times;
his praise will always be on my lips."
Psalm 34:1
The doctors said they were encouraged by the results. Connor's blood counts look good and he's tolerating the new treatment well. They said it usually takes awhile to see results from the Zometa. They weren't expecting much of a difference yet. He had only received one dose of Zometa before this recent scan. We will re-scan him in 3 months.
PLEASE PRAY FOR THE ZOMETA TO START WORKING ON HIS BONE DISEASE. IT WOULD BE GREAT TO SEE SOME IMPROVEMENTS ON THE NEXT SCAN. PLEASE CONTINUE TO PRAY FOR COMPLETE HEALING FOR CONNOR, PATIENCE FOR US AND THAT WE WOULD BE A SOURCE OF ENCOURAGEMENT FOR OTHERS.
After 2 1/3 years of treatment, I thought I would become immune to the frustrations of treatments, hospitals, scans and WAITING, WAITING, WAITING. I find that most of my time is spent waiting. Waiting to see the doctor, waiting to start the scan, waiting until the scan is over, waiting to get his infusion, etc. Last week, I was so frustrated by certain events that delayed our return home. Something that should take 30 minutes, ends up taking 4 hours. Scans that should start at 1:00, start at 4:00. Anyone who deals with hospitals regularly knows that this is to be expected. However, I found myself leaving the hospital Thursday and Friday very weary of all this. Tait says that it's probably an accumulation of several months of dealing with this.
When I feel this way (weary, tired and frustrated) there is only one source that can renew my spirits and my energy. God is that source. After I returned home from Houston, I heard this song from Little Big Town, called "Bring It on Home to Me." Although, it is a country western song, I couldn't help thinking that with everything we should "bring it on home" to our Heavenly Father, who wants to "make it all right."
You've got someone here
Wants to make it all right
Someone to love you more
Than I have right here
You've gotta bring it on home and I'll hold you tight
A hand to lead you on through the night right here
I know your heart can get
All tangled up inside
But don't you keep it to yourself
When your long day is over
And you can barely drag your feet
When the weight of the world
Is on your shoulders
I know what you need
Bring it on home to Me
Let Me be your safe harbor
Don't let the water come
And carry you away
You've got someone here wants
To make it all right
Someone who loves you more
Than life right here
Hopefully, we'll always remember to "bring it on home" to Him, because He "loves us more than life."
Thanks for your prayers,
Joy Cruse
Thursday, August 23, 2007 10:28 PM CDT
School has begun. Everyone is enjoying it so far (even Carson). He wasn't too excited about going to Kindergarten and going 5 days a week. I've been relieved to see that he really enjoys it so far. It probably helps that he has Connor's past teacher, Mrs. Thornton and her asst. Mrs. Collins. We're glad to see them again this year. Connor has some good friends in his class this year and his teacher seems great. MacKenzie is just going with the flow- she's easy to please. She loves seeing all her old friends again.
Yesterday, I took Connor to an ENT appt. As you may or may not know, Connor has hearing loss due to high doses of a chemotherapy drug called carboplatin. Due to the substantial high pitch hearing loss, he wears hearing aides. This hearing loss is permanent. The audiologist checked his hearing yesterday, because she wanted to compare it to the test done a year and a half ago. She was testing to see if his hearing loss had worsened. Much to her surprise, he had SIGNIFICANT IMPROVEMENT in his hearing. She kept re-checking him to make sure. She said he shouldn't be hearing these sounds. His hearing should not improve. She was baffled. He'll still have to wear hearing aides, but we need to reprogram them because they're not set to the right volume any more. Again, another mystery? No. Another miracle. Thank you God for your ever present love and attention. Wow! I'm just blown away.
"Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." Lamentations 3:21-23
"I have loved you with an everlasting love;
I have drawn you with loving-kindness.
I will build you up again."
Jeremiah 31:3
We'll be heading down to Houston next week. PRAY FOR GREAT SCANS AND PRAY FOR A COMPLETE HEALING FOR CONNOR. PRAY FOR US TO SHOW GOD'S LOVE TO OTHERS.
Please continue to pray for our friends, Grayson, Alaina, Bronson, and Patrick to remain NED. Also, pray for Keira, Alexa and Alex as they continue to fight this horrible beast called neuroblastoma.
Happy 50th Anniversary Grandma Joyce and Grandpa Jerry! I'm so glad you could put up with each other all these years.
Joy Cruse
Wednesday, August 15, 2007 9:28 PM CDT
It's been a peaceful week. We've enjoyed swim time with friends and a Day at Hawaiian Falls. I guess it's our last full week before school starts. All good things must come to an end; even summer vacation.
Connor's feeling great and looking great. He's been gaining weight and he doesn't look nearly as skinny as he used to look. He needed a few extra pounds. He's got a great tan and he looks very fit.
We're still scheduled for scans at the end of the month. PLEASE PRAY FOR GOD'S COMPLETE HEALING OF CONNOR! PRAY FOR GREAT SCANS! PRAY THAT WE CAN SHOW GOD'S LOVE TO EVERYONE WE MEET.
By the way, Team Connor is doing very well. So many of you have helped us raise over $75,000 with the raffle tickets and on-line donations. We've got about a month to go before the raffle drawing and Reach the Beach Relay. Thank you to everyone who has participated. We are so grateful for your support and contributions.
I'll leave you with this e-mail devotional my friend, Elizabeth Collins, sent me.
By Dr. James C. Denison
Teaching Pastor, Park Cities Baptist Church, Dallas, Texas
August 10, 2007
Topic: the presence and power of God in the pain of life
"We've been learning to claim God's promise that "even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me" (Psalm 23:4). In a fallen world with collapsing bridges and a war on terror and economic uncertainty, our Shepherd is ready to lead his sheep all the way home. Perhaps these lessons will help us give our hard days to our Father.
First, hard days can be holy days. The valleys of deepest shadows can be those times when we know God most personally and intimately, if we choose for them to be so. Richard Foster, the great writer on spirituality, says, "God becomes a reality when he becomes a necessity." Terry Anderson, the long-time hostage, said, "We come closest to God at our lowest moments. It's pretty painful to get to that point, but when you do, God's there." Mother Teresa said, "You'll never know that Jesus is all you need until Jesus is all you've got."
Second, hard days can be healing days. Just as water flows best through a ditch or channel or valley, so the blessing and usefulness of God flows best through the valleys carved in our lives by hard times. Cancer patients make the best encouragers for other cancer patients. Those who have lost children are the best ministers to those who lose children. When my father died the one person whose words helped most was Linda Sharp, whose father and then pregnant older sister had died in the previous six months. God never wastes a hurt. You may not see how people are watching you in the valley, but they are. And your faithful suffering can be your greatest witness.
Last, hard days are never the last days. Some suffering is inevitable. It's "when" we go through the valley, not "if." We go "through" this valley, to the other side. God promises us that "no temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it" (1 Corinthians 10:13). Remember Psalm 30.5: "His anger lasts only a moment, but his favor lasts a lifetime; weeping may remain for a night, but rejoicing comes in the morning." It may be midnight for your soul on this Friday morning, but morning is coming. This is the promise, and the grace, of God."
I just wanted to share a praise with you that our friend, Grayson (www.caringbride.org/visit/graysonbradshaw) had his scans this week and he is officially NED - No Evidence of Disease!! Thanks for all your prayers.
Joy
Sunday, August 5, 2007 2:44 PM CDT
We just got back from vacation in Playa del Carmen and it was wonderful. Everyone swam all day at the pool and in the ocean. The beach was beautiful. Connor and Carson have turned into fish this summer, because they never want to leave the water. MacKenzie's been that way for a long time and the boys are now joining her. I think Grandma, Grandpa and Aunt Cody had a good time, too. Mason really loved all the sand on the beach. Tait kept mentioning how this was not a relaxing vacation and I had to remind him that this was a "family" vacation, not a romantic getaway. I think he was somewhat confused. haha
Now, we are sadly counting down the days until school starts. We've enjoyed our days of sleeping in and no homework. I don't know who's going to miss summer vacation more, the kids or mom?
Connor is feeling great! He's even gained a few pounds this summer. He's tolerating the low dose chemo very well and the Zometa drug he received in Houston has had very little side effects. He is now taking calcium supplements because Zometa pulls calcium from Connor's blood and stores it in his bones. We have to check his calcium levels weekly. Besides that, this treatment is a breeze. We almost feel "normal" again. We are enjoying this low intensity treatment.
We will return to Houston at the end of August for another MRI, MIBG scan and a dose of Zometa. PLEASE PRAY THAT THE MIBG SCAN WILL SHOW MUCH IMPROVEMENT IN HIS BONE DISEASE AND THE MRI WILL SHOW CONTINUED SHRINKAGE IN HIS TUMORS. Wouldn't it be grand if they would shrink enough so the surgeons could get ALL the tumors out? PRAY THAT GOD WOULD KILL EVERY CANCER CELL IN CONNOR'S BODY; PRAY FOR A COMPLETE HEALING. PRAY THAT WE WOULD BE AN EXAMPLE OF GOD'S LOVE TO THOSE WE MEET.
As I read through other caringbridge websites, I learn about other children's battles with neuroblastoma. Many of these children I do not know personally, but I do feel like I know them and I know the battles they fight every day. I rejoice with each family who's child has reached a state of NED. Such a relief to know that the treatment has been successful for them. But, even these families can not fully enjoy this victory as they anxiously wait several years to see if their child is truly cancer free.
Yet, many other children have relapsed and their world of regained normalcy has just been turned into a nightmare once again. Days and nights of rigorous treatment have begun again, so soon after they felt secure that this fight was finished. And other children who have had stable (refractory) disease have recently seen scans that show their disease is progressing. In both instances, these families are filled with fear and dread, so overwhelming that you can just feel their pain by reading their journal entries.
Although Connor is not NED (No Evidence of Disease) and I know his battle is far from over, I can't help but rejoice in the fact that his disease is not progressing. I don't think I realized how significant that was until recently. Over the last few months, I have read many websites where children have relapsed, have had disease progression and many have lost their battle with cancer. My heart breaks after I read each journal entry. And then I look at Connor who looks and feels so GREAT right now! Thank you God for that miracle!
How can it be? It's as if he all the rules and norms of neuroblastoma don't apply to him right now. The doctors say he should feel sick or tired or have pain, yet he has none of these symptoms. With the amount of tumors he has present, the cancer should be growing, yet it isn't. It is unlikely that he should still respond to chemotherapy, yet he still does. All I can say is "Thank You, God!" I know this is a gift from Him. I'm trying to repay Him for this gift by being grateful for Connor's exuberance, for his love of life and his love of God. I try to not dwell on the uncertainty of our future as God tells us in Matthew 6. Instead, I try to enjoy every beautiful moment He has given us and I keep my faith strong by trusting in the Lord.
"Therefore do not be anxious, saying, 'What shall we eat?' or 'What shall we drink?' or 'What shall we wear?' For the Gentiles seek after all these things, and your heavenly Father knows that you need them all. But seek first the kingdom of God and his righteousness, and all these things will be added to you. Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Today has enough worries of it's own." Matthew 6:31-34
Thanks again for your prayers. Our friend, Brent McCreesh has just reached his 2 year mark of being cancer free!! Praise God!! We pray that many more of our friends will reach that milestone and we pray that Brent will continue to see many, many more years of being cancer free.
Joy Cruse
Thursday, July 26, 2007 10:40 PM CDT
Tait, Mackenzie and I have been in Milwaukee this week for Northwestern Mutual's Annual Meeting (Tait's company). They are celebrating their 150th Anniversary. It was wonderful! On Saturday, we are having a small family reunion at our house and on Monday, we are heading to Playa Del Carmen for a family vacation. I'm not going to add much to the journal this week because of our travels and the lack of new news. I will update again when we get back.
Happy Birthday Grandpa and Papa Burt! You old stinkers give "getting old" a bad name!
JOY
Friday, July 20, 2007
We made it back from Houston last night. The trip went well. Connor did his CT scan and his MRI Monday and then we went over the results with his oncologists and surgeons on Tuesday.
First of all, the CT scan showed that two of the tumors (the abdominal one and the one near the aorta) are a little smaller. Wow! That hasn't happened in 2 years. They've always been stubborn and have remained the same size (which is better than getting bigger). Thank you God. The oncologists are hopeful that the continued use of this low dose chemo will continue to shrink the tumors more. Wouldn't that be grand?!?! The tumor around the spine is still the same size.
Secondly, we discussed the surgery to remove the tumor around the spine. The surgeons want to wait awhile before they commit to a surgery date. According to the surgeons in Houston (and I believe this is common with most surgeons), there are certain criteria that need to be met before they try to resect a tumor. First of all, is the tumor harming the patient? In Connor's case, NO. The tumors are just sitting there beside major organs and his spine, but it is not pressing on anything or interfering with any processes. Connor is very healthy, besides the small fact that he has cancer. haha. If the status changes, the surgeons will then procede to resect whichever tumor is causing the problem.
Another reason why they would want to attempt to remove the tumors is if they feel they can get all of them out. Because the abdominal tumor is right in the middle of a lot of "expensive real estate," the surgeons do not feel like they can remove the whole tumor at this time. Hopefully, (with a miracle from God) the tumor will shrink to a manageable size someday and the surgeons will then start the process to remove all the tumors.
The third reason is that the goal of the surgery is to make the patient cancer free. Because Connor still has some disease in his bones, the surgery would not accomplish a cancer free (or No Evidence of Disease) status for Connor. With the start of this new drug Zometa, we are hopeful that it will accomplish this third goal... removing all the disease in his bones. Connor got the first dose of Zometa on Tuesday and he seems to be tolerating it well.
For the current time, Connor will continue with this treatment. He will continue to get frequent scans which will help determine our future direction (whether we stay on this current path or try a new on). Maybe some day, God will feel it is time to remove these tumors. Until that day, we will continue fighting the disease with the treatments that are working best for Connor.
PLEASE CONTINUE TO PRAY THAT THIS NEW TREATMENT WILL FINISH OFF ANY LIVE CANCER CELLS IN CONNOR. PLEASE PRAY THAT GOD WILL CONTINUE TO GUIDE THESE DOCTORS AND SURGEONS. PRAY THAT WE WOULD BE A LIGHT TO ALL THOSE WE MEET AS WE JOURNEY THROUGH THIS DARK VALLEY.
I want to thank the Reeter family for their hospitality. They offered us there home all of last week and we are forever grateful. Connor had a great time playing with the boys' Star Wars games. Connor had so much fun, he's probably going to want to visit them every time we go to Houston.
Also, thank you to everyone who has become involved with Team Connor. We feel truly blessed by the outporing of love from so many people. So many people have donated money and bought raffle tickets. The total after just three weeks is almost $47,000. I'm so excited to think about how many kids we will all be helping. God bless you all.
Great news for our friend, Patrick Rider, this week. He's No Evidence of Disease after his transplant. Praise God!! We'll continue to pray for him until his next scans in October. Please continue to pray for our friends, Alex, Alaina, Bronson, Grayson, and Keira.
"He touched their eyes and said, 'According to your faith will it be done to you.'" Matthew 9:29
"You are my hiding place; you will protect me from trouble and surround me with songs of deliverance." Psalm 32:7
Joy Cruse
Friday, July 13, 2007 4:51 PM CDT
Thanks for checking in on us. Connor's having a great week. He's been enjoying baseball camp with his friend, Sayers. Playing baseball in the mud is fun for them, but not so much fun for us moms. Connor's also been running with Miley (the new lab puppy) and swimming whenever it's not raining. MacKenzie is gone this week at church camp and we are missing her. I'm glad she's coming home tomorrow. Oh, I almost forgot, HAPPY 21ST BIRTHDAY, COUSIN LEXIE LU!!!! We love you!
The treatment that Connor is on right now is so low maintenance; it's been great for this summer. Although we're enjoying it, it's very deceivng. It makes it easy to forget the monster we are still fighting. PLEASE CONTINUE TO PRAY FOR CONNOR'S HEALING. PRAY THIS NEW TREATMENT WILL FINISH OFF THE DISEASE IN HIS BONES. PRAY FOR GUIDANCE FOR THE SURGEONS AS WE SPEAK ABOUT CONNOR'S POSSIBLE UPCOMING SURGERIES. PRAY FOR GOD'S GUIDANCE FOR TAIT AND ME. WE WANT TO FOLLOW WHERE HE LEADS US. PRAY WE WILL BE A LIGHT IN THIS DARK WORLD OF CANCER AND PRAY FOR MY STRENGTH AS I SPEAK WITH MORE DOCTORS/SURGEONS ABOUT CONNOR'S "CHALLENGING" SITUATION. I really don't look forward to these talks. PRAY THAT WE WOULD TRULY ENJOY THIS TIME WITH CONNOR AND THE FAMILY AS HE IS FEELING SO GREAT RIGHT NOW. It's nice not having to deal with hospitals, vomiting, diarrhea, lethargy, etc.
As we have travelled to many hospitals in several states, we continue to see more and more children who are fighting this horrible disease. Unfortunately, many of the children are losing their fight. The statistics (printed on the left side of this page) are very alarming and real. Connor, like many other children fighting neuroblastoma, have found themselves in a difficult situation. They are left with few options. They are constantly trying all the new treatments/clincal trials available to them to beat this race against time.
There was a Neuroblstoma conference in Chicago a couple weeks ago, where doctors and researchers shared with parents the most promising NB treatments available. The problem with so many of these treatments is the lack of funding. So many children will be turned away from a clinical trial because there is not enough money, or the trial cannot even begin without the proper funding. Or researchers don't even have the money to try and find the cure.
Tait and I felt compelled to do something about this, but we didn't know where to start. Our friends from New York, Matt Russo and the McCreesh family, gave us the jump start we needed. We've started "Team Connor." It represents our efforts to try and make a difference for these children, our efforts to try and raise money to help them.
We've created a newsletter for Team Connor (with a LOT of help from Aunt Christie), which many of you have already seen. For those of you did not receive the newsletter, we are working on providing a link to it so that everyone can have access to it. The newsletter explains the purpose of Team Connor and it will give everyone who wants to help an opportunity to do so. Please be looking for the link. It should be available soon.
"Is it not to share your food with the hungry and to provide the poor wanderer with shelter- when you see the naked, to clothe him, and not to turn away from your own flesh and blood? Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the Lord will be your rear guard. Then you will call, and the Lord will answer, you will cry for help and he will say; 'Here I am.'" Isaiah 58:6-9
Again, thank you so much for your prayers. We have some good news about our friend, Grayson. He finished his second transplant and he's at home enjoying some R&R. Keira's (keirabo@blogspot.com) scans showed that her cancer is decreasing, so the treatments are working. Please continue to pray for our friends. Your prayers are working!
Thanks!
Joy Cruse
Wednesday, July 4, 2007 11:18 AM CDT
Happy 4th of July!!!! We're looking forward to a day of fireworks and fun (if it doesn't rain all day). Connor's still feeling great and nothing much has changed with his treatment or plans for Houston. PLEASE KEEP PRAYING FOR THIS NEW TREATMENT TO FINISH OFF THE DISEASE IN HIS BONES. PRAY THAT THE TUMOR HAS REMAINED THE SAME SIZE SINCE THE OPERATION LAST JULY (THERE WAS SOME DISCREPANCY BETWEEN THE MOST RECENT CAT SCANS AND THE POST OPERATIVE REPORT). THE SURGEONS IN HOUSTON WILL BE COMPARING ALL THE CAT SCANS SOON. THEY WERE JUST WAITING ON EARLIER SCANS FROM DALLAS.
PLEASE PRAY FOR GUIDANCE FOR THE DOCTORS, SURGEONS AND US IN REGARDS TO CONNOR'S TREATMENT. PRAY THAT WE WOULD BE ABLE TO HELP AND ENCOURAGE OTHER FAMILIES GOING DOWN THIS SAME ROAD.
On a much lighter note, we have a new addition to the family. We brought home a new white lab puppy last week. She is so cute. Her name is Miley Faith Destiny Cruse (the name will be familiar to all those Hannah Montana fans out there). All the kids love her. MacKenzie has been a big help with her. She's taken on so much of the responsibility for her care. Thank goodness, because my plate's pretty full with all my responsibilites right now. Lucky for us, Miley has been a great dog. I think God knew we needed an easy one. She's already potty trained. Yeah! We'll have pics soon.
Please continue to pray for our friends fighting this ugly disease... Alex, Bronson, Alaina, Grayson, Raul, Alexa, Patrick, Keira, and so many others that I haven't even met .
I'll leave you with this prayer from Stormy Omartian. I think the words are beautiful and relevant to our situation.
"Lord, You alone know the depth of the burden we carry. We may not understand the specifics, but you have measuerd the weight of it on our shoulders. I don't want to minimize what Your are doing in our lives, for I know You work great things in the midst of trials.
God, You are our refuge and strength, a very present help in trouble (Psalm 46:1). You have invited us to "come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need" ( Hebrews 4:16). I come before Your throne and ask for grace for our family. Strengthen our hearts for this battle and give us patience to wait on You (Psalm 27:1-4). Build us up so that no matter what happens we will be able to stand strong through it. Help us to be always "rejoicing in hope, patient in tribulation, continuing steadfastly in prayer" (Romans 12:12). Give us endurance to run the race and not give up, for You have said that "a righteous man may fall seven times and rise again" (Proverbs 24:16). Help us remember that "the steps of a good man are ordered by the Lord, and He delights in his way. Though he fall, he shall not be utterly cast down; for the Lord upholds him with His hand" (Psalm 37:23,24).
I pray we will look to You to be our "refuge until these calamities have passed by" (Psalm 57:1). May we learn to wait on You because "those who wait on the Lord shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint" (Isaiah 40:31). I pray that we will find strength in You as we cry out to You. You will hear us and save us from all our troubles (Psalm 34:6).
Amen"
Joy Cruse
Wednesday, June 27, 2007 5:08 PM CDT
We are enjoying a week of fun and activities in Dallas this week...swimming, Chuckee Cheese, Hawaiian Falls Waterpark and the Ft. Worth Zoo. I'm having a hard time keeping up with these kids. Whew!!!! Connor has so much energy (probably because his red blood count is great and he's "eating like a hog").
He's got a great tan from all the swimming and he looks so good and so healthy. It's so easy for me to forget that Connor has cancer. Do you think the scans could ALL be wrong? Maybe the cancer is all gone. haha! I wish!!! It just seems like such a contradiction. Connor looks and feels great, but his cat scans (showing those old, familiar tumors) don't look so great. Boy, I wish they would go away or please would some surgeon just cut them out! Sorry, I guess I was just thinking out loud.
Anyway, we have a new schedule for Houston. Connor and I will go to Houston the week of July 16th. He'll repeat the cat scan and MRI to make sure the disease is still stable on this new treatment. We'll go over ALL the scans with the oncologists. PLEASE REMEMBER TO PRAY THAT THE TUMORS HAVE REMAINED UNCHANGED SINCE HIS SURGERY LAST JULY, AND THAT THE SCANS WOULD REFLECT THIS. We will also meet with the surgeons that week to HOPEFULLY schedule the surgery in August. PLEASE PRAY THAT GOD WOULD GUIDE THESE SURGEONS AND THEIR DECISIONS FOR CONNOR'S SURGERY. PRAY THAT WE WOULD KNOW GOD'S WILL FOR CONNOR'S TREATMENT/SURGERY PLAN. Connor will also get his first dose of Zometa (the osteoperosis drug that is also used for bone metasteses). PLEASE PRAY THAT THIS DRUG WILL KILL THE CANCER LEFT IN HIS BONES. Thank you for your prayers.
Also, please lift up my Aunt Mary and her family because my Uncle Eldon just passed away. He was a wonderful man. He served the Lord as a Methodist Minister his whole life. We love him dearly and we will miss him.
Last night, Tait and I were talking about how it's so amazing how when God shuts one door, he opens another. That is so evident in this journey with Connor. When Connor was first diagnosed, we asked many physicians if we should stay at Children's in Dallas or go somewhere else like St. Judes. Everyone gave us a resounding "yes" to stay in Dallas. Then when we were seeking guidance in the Spring of '06 as to whether or not we should resect Connor's tumors, we were given good advice to resect the tumors and the one name that kept coming up was Dr. Shamberger in Boston. It was a resounding "yes" for Boston. Dr. Shamberger was wonderful and this surgery gave us crucial information to keep seeking treatment for Connor.
At this juncture, we were torn as to which direction to go. Other doors kept shutting and one opened... New York and Dr. Kushner. Thank goodness we went there, because he was the one who alerted us to the fact that the cancer in Connor's bones was still active. This started us on new treatment which has reduced the cancer in the bones 60
As you know in April, we had another door slam shut in NY. Before this happened, I was getting a lot of people recommending this doctor in Houston, Dr. Russell. And here we are seeking treatment in Houston, where we feel at peace once again.
I'm just so overwhelmed by God's attention to our needs, even the smallest detail. At many of these crossroads, we could have been at a loss for direction, at a loss for more options, but God has always provided. THANK YOU GOD FOR GUIDING OUR STEPS AND PROVIDING US WITH WHAT WE NEED WHEN WE NEED IT.
"And my God will meet all your needs according to His glorious riches in Christ Jesus."
Phillipians 4:19
"The steps of a good man are ordered by the Lord." Psalm 37:23
"Call unto me, and I will answer thee, and show thee great and mighty things." Jeremiah 33:3
"But they who seek the Lord shall not be in want of any good thing." Psalm 34:10
Thanks again for your prayers. Please continue to pray for Grayson as he is still in his second transplant, needing his immune system to start working. Also pray for all the families that will convene at the Neuroblastoma Conference in Chicago this weekend. Please pray that the doctors there can shed some light and offer some hope to these families.
Thanks,
Joy Cruse
Wednesday, June 20, 2007 4:26 PM CDT
We finally have the final word on the surgery. It is postponed until August. The surgeon wants to complete a few more steps before the actual surgery. First, he wants to meet with me in person before he sets the surgery date. He wants to go over all the risks that are involved. He wants to make sure that I understand that removing the tumor is no guarantee that the tumor will not grow back. Do we feel that the importance of removing the tumor out-weighs the risks involved with the surgery? So, I am looking forward (haha) to yet another enlightening conversation with another doctor. Yippee! This will probably happen around the second week in July, along with another MRI to make sure the disease is still stable on this new chemo regimen.
The surgeon is also wanting to see more of Connor's cat scans. He only has two, one from April and one from May of this year. He wants to see the scan from diagnosis and the scan following surgery last July. He wants to see for himself that this disease is stable. He has the post-operative report from Dr. Shamberger's surgery last July. Comparing the report to the most recent scans, the surgeon is concerned that the abdominal tumor is a little larger than it was post surgery. Has it grown or is there just some discrepancies between the post-operative report and the scan? I also wonder if scar tissue from radiation and surgery could make the tumor appear larger. Just to make sure, the nurse practitioner at Children's re-checked the cat scan reports from this last year and they all say "disease is stable" and "no change." PLEASE PRAY THAT THE TUMOR IS TRULY UNCHANGED/STABLE SINCE CONNOR'S SURGERY LAST JULY.
When we go to Houston in a couple weeks, Connor will also receive his first dose of Zometa. Zometa is a drug often used for osteoperosis. They are also using this drug for adults that have bone metasteses, where the cancer has spread to the bones (like Connor). They have recently started using this drug to fight the bone disease in neuroblastoma. It will also strengthen his bones where the cancer has eaten away at it (cytic lesion). He will receive a dose of this once a month. PLEASE PRAY THAT THIS DRUG WILL CONTINUE TO KILL THE DISEASE IN HIS BONES.
PLEASE CONTINUE TO PRAY FOR GUIDANCE - ON TREATMENTS AND FUTURE SURGERIES. We greatly appeciate your prayers and support.
Please pray for our friend, Grayson, (www.caringbridge.org/visit/grasysonbradshaw) as he is in the middle of his second bone marrow transplant.
We want to say good-bye to Dr. Jenny Wright. She was the doctor we met at Children's that first night of diagnosis. She was instrumental in helping us through the first year of treatment. We wish you the best at your new hospital and we'll miss you. Thanks for your great care of Connor!
"Cast your burden on the Lord, and He shall sustain you; He shall never permit the righteous to be moved." Psalm 55:22
"As for me, I will call upon God, and the Lord shall save me. Evening and morning and at noon I will pray, and cry aloud, and He shall hear my voice. He has redeemed my soul in peace from the battle that was against me." Psalm 55:16-18
"You, who have shown me great and severe troubles, shall revive me again, and bring me up again from the depths of the earth. You shall increase my greatness, and comfort me on every side." Psalm 71: 20,21
Joy Cruse
Sunday, June 17, 2007 10:47 AM CDT
I just wanted to add a quick note about Connor's upcoming surgery date. We still do not know when the surgery will be. The spine surgeon did not want to schedule the surgery until he received the MRI. There was a hang up with the MRI and they finally received it Friday. The surgeons and doctors have a meeting on Tuesday where they will discuss Connor's case, look at the MRI and schedule the surgery. I will let you all know when we have a firm date. PLEASE CONTINUE TO PRAY THAT THE DATE IS NOT TOO FAR OFF FROM THE ORIGINAL DATE OF JUNE 27. Also, we checked Connor's blood counts on Thursday to make sure this low dose chemo was not affecting his bone marrow too harshly. God is so gracious. His platelets and white blood cells both rose and his red blood count stayed the same. This is such a blessing. If this low dose chemo was also toxic to his bone marrow, I'm not sure what other treatments would be available for Connor. All I can say is THANK YOU, GOD.
Thanks for all your prayers.
JOY
Friday, June 8
Happy Summer to all! I thought I would give the latest update on Connor, or as he is known affectionately around our house, Con-Con, the Superhero. The last few weeks have entailed a lot of change in our household. Trips to New York and Houston, and an upcoming surgery in Houston. As I reflect upon what my family has been through over the last 106 weeks and all of the clinic visits, nights at the hospital, chemotherapy and radiation, from finger pokes to bone marrow transplants to visits to Harvard and New York City, and now down to Houston, I come away with one word and that is thankfulness.
Thankfulness because my son is alive. And gratitude. I am both thankful and grateful that my son is alive today, 106 weeks later.
With everything going on in his life, I had a dark moment about a week ago when I finally saw the report of the latest CT scan. Mind you, the CT scan hasn't changed much since the original diagnosis except a section of the original tumor is reduced about 70 However, there is still cancer inside of him in the remaining tumors.
I decided to mail out a copy of the latest CT scan report to some of my physician clients. One of my great friends, a Urologist, called me and informed me, much to his horror, how bad this situation really was and still could be with Connor. I came away from that conversation with him thinking "Wow, the child that we see in person, Connor, is different from the kid we see on paper." And I had a grateful heart again, for this child is alive today because of God. The beautiful Psalm David wrote "I will extol the Lord at all times; His praise will always be on my lips..." is my message this week. I am grateful that my son is alive taking swimming lessons, doing karate, vacation bible school, wrapping up baseball season, having nerf missile fights at night, and some serious wrestling at night with his brothers and me.
I end this update where I started with a thankful and grateful heart. Thankful and grateful to our friends, family, our church body, Prestonwood Baptist Church, Connor's school, Prestonwood Christian Academy, and all the people all over the world who are praying for our son. For it is God that has kept this boy alive. There is no other explanation. Joy and I start this weekend grateful to take him to church, to a restaurant after church and to tuck him in bed that night. We're grateful he's alive 106 weeks later.
I hope all of you have a great week.
Tait
Thursday, May 31, 2007 8:18 PM CDT
We received the results of the MIBG scan. It looks like it has improved some. It's hard to tell completely, because they did not compare it to the past scan. I guess they just wanted a starting point. They said they were looking at it like a pass/fail. Does it light up or not. Of course, it will light up.???? Also, they only gave me a summation not a full report. The summation mentioned the tumors, and disease in the bones in the lower extremities. I beleive it must be better, because the final summation they sent me said that the bones lit up only in the lower extremities. Last time, there was still some disease in the upper extremities. So the doctors said take that as a positive sign. So, I guess I will! PRAISE GOD...NOTHING NEW AND IT LOOKS LIKE THE SCAN IS BETTER. THAT IS A MIRACLE IN ITSELF.
The surgeons have decided to start with the tumor around the spine. Their will be another surgeon involved now with Dr. Nuchtern, so the date of the surgery may change. The surgeons have to have a common date available for surgery. I hope it stays the same or close to it. I've rearranged my summer around June 27 and I've arranged childcare back home for 2 weeks following surgery. PLEASE PRAY THAT THE NEW SURGERY DATE IS THE SAME AS THE OLD ONE OR CLOSE TO IT. PRAY THAT GOD WILL GUIDE THE SURGEON'S HANDS DURING THE SURGERY. PRAY FOR CONTINUED GUIDANCE.
Connor had a virus this week, so he has not started the low dose chemo. He will start tomorrow or the next day. PLEASE PRAY THAT THIS CHEMO WILL WORK AND WE WILL SEE MORE OF THE CANCER DIE. PRAY THAT THIS CHEMO WILL GIVE HIS BONE MARROW THE REST IT NEEDS TO GROW STRONGER, WHILE IT ALSO WORKS TO KILL THE DISEASE. It is a very tricky situation.
At church on Sunday, Pastor Graham spoke of Rev. Jerry Fallwell and the legacy he has left behind. He showed us a video clip that was presented at the funeral. The song that played while the pictures appeared on the screen was beautiful. It sang of being faithful. The song relayed this message....we hope that everyone who follows behind us will say that we were faithful. I kept thinking to myself when we get to the end of this journey, I hope that all will say that we were faithful. PLEASE PRAY THAT WE ARE FAITHFUL TO THE END.
The words from Jeremy Camp's song, "I Still Believe" come to mind as I'm writing this....
"Scattered words and empty thoughts
seem to pour from my heart
I've never felt so torn before
seems I don't know where to start
but it's now that I feel Your grace falls like rain
from every fingertip, washing away my pain
[Chorus:]
I still believe in Your faithfulness
I still believe in Your truth
I still believe in Your holy word
even when I don't see, I still believe
Though the questions still fog up my mind
with promises I still seem to bear
even when answers slowly unwind
it's my heart I see You prepare
but its now that I feel Your grace fall like rain
from every finger tip, washing away my pain
[Chorus]
The only place I can go is into your arms
where I throw to you my feeble prayers
in brokeness I can see that this was your will for me
Help me to know You are near"
"Without faith, it is impossible to please Him: for he that cometh to God must believe that He is, and that He is a rewarder of them that diligently seek Him." James 2:17
Thanks for all your prayers.
Joy Cruse
Saturday, May 26, 2007 4:13 PM CDT
We had a good trip to Houston. Connor completed his CT scan and his MIBG scan. We have the results of the CT scan and they said nothing has changed since the last scan. That is good news. The tumors have not grown since he was diagnosed 2 years ago. We are still waiting on the results of the MIBG scan. Since this is Memorial Weekend, I bet we won't find out until Tuesday. This is the scan that will indicate if his bone disease is getting better. PLEASE CONTINUE TO PRAY THAT THE DISEASE CONTINUES TO DIE.
The doctors put him on a daily regimen of a low dose chemotherapy drug called cytoxin. This should keep the cancer from growing while he undergoes these multiple surgeries. The first surgery is still scheduled for June 27. The surgeon has not decided if he's going to start with one of the tumors in the chest or the tumor in the abdomen. He's waiting until he has spoken with the surgeon in Boston (Dr. Shamberger) who resected most of the abdominal tumor back in July of '06. I'm relieved to see that the doctors in Houston are still committed to getting as much of these tumors out as possible.
PLEASE CONTINUE TO PRAY FOR GUIDANCE FOR THESE DOCTORS AND SURGEONS. WE JUST WANT TO MAKE SURE WE ARE ON THE PATH THE LORD WANTS US ON. PRAY THAT WE WILL CONTINUE THIS RACE WITH ENDURANCE AND WE WILL HAVE WORDS OF ENCOURAGEMENT FOR OTHERS WHO ARE TRAVELLING ALONG BESIDE US.
Thank you for your prayers for our young friends. Alaina is doing well after her second transplant. Patrick Rider and Grayson Bradshaw are home recovering after their first transplant. All three of these children show NED (no evidence of disease) along with our friend Bronson Balzac. Praise the Lord for their continued good reports. Please continue to pray for them that they do not relapse and pray for Alex Podeszwa as he continues to fight this disease in his bones. Pray for their guidance.
As I mentioned last week, I continue to be amazed at the Lord's presence through this long, hard journey. We are so grateful to feel His presence. Often times we'll feel his Love through our friends and family, even through strangers that we meet on a plane, like Celeste whom we met on our flight to Houston Tuesday. She and her friends and family are now praying for Connor. It's so fun to watch the Lord work through all of this. As times get hard, it's great to know that we can draw closer to Him. I like the song, "Every Time I Breathe," by Big Daddy Weave, because it speaks so much about this.
"I am sure
All of heaven's heard me cry
as I tell You all the reasons why this life is just too hard
But day by day,
Without fail I'm finding everything I need
In everything that You are to me
(Chorus)
Every time I breathe You seema a little bit closer
I never wanna leave I wanna sty in Your warm embrace
Oh basking in the glory shining from Your face
And every time I get another glimpse of our heart
I realize it's true, that You are so marvelous God
And I am so in love with You
Yeah, so in love with You
Now how could I,
After knowing One so great
Respond to You in anyway that's less than all I have to give
But by your grace,
I wanna love You not with what I say but everyday
In the way that my life is lived
Chorus again
Wrapped in Your mercy I wanna live and never leave
I am held by how humble, yet overwhelmed by Your majesty
Captured by grace now I'm finding I am free
You are marvelous God and knowing You is everything"
In Christ,
Joy Cruse
Wednesday, May 16, 2007 10:19 PM CDT
Yesterday was May 15 and it was the 2nd anniversary of Connor's diagnosis date. Wow! What a crazy 2 years it has been. We've seen 12 rounds of chemo, 2 bone marrow transplants, 18 treatments of radiation, one surgery to resect the tumor, 2 trips to Boston, 3 trips to NY and 1 trip to Houston, with much more to come.
It's been a roller coaster, too. After transplant they felt like everything was dead, okay maybe it's not dead. Then the pathology of the tumor they resected in Boston looked like it was dead, but then later they said there was 5hey weren't sure about. It may still be alive. Then we went to NY where they said the disease was still alive in the bones. Wait a minute. I thought that was supposed to be dead, too. Okay, we'll do more rounds of chemo. Now after the chemo, the scans show that the disease is "Resolved!" Yeah! The cancer in the bones is resolved. Back to NY. What? It's still alive in the bones? More chemo and surgery is schedule for April 25 back in NY. Platelets are too low, cancel the surgery indefinitely. Now to Houston. Here we are. Whew. I'm tired just typing all this.
After all that, it's hard to look back to that first night of diagnosis in the ER. Actually, Tait and I can't even talk about it. All those emotions start creeping up again and we get sick to our stomachs. Just starting to remember that night will bring the darkest of emotions crashing down on me. It was all so unreal. I don't think I've ever felt so raw before. It truly was a nightmare. I kept waking up on a fold out couch in Children's Medical Center to find out that the nightmare was indeed real. My son has cancer. I can't believe this. How will we survive this?
Looking back over the past two years, there have definitely been some scary times, hard times and heart-breaking times. BUT, the one thing that remains constant through all this is that HE has never left our side. God has carried us through this dark journey. He has given us hope when the doctors could offer us none. He's given Connor vitality when, according to the scans, he should be "sick" and tired. He has given all of us strength when we had nothing left. He gave us answers to our prayers. He gave us blessings along the way. He's shown us kindness through our friends, family and strangers. He's given us encouragement through his Word. He's traded in our sorrow for joy. He gave us peace when we our world turned upside down. He gave our son life, when all the odds out there say he should be dead.
I know we have a lot further to go in our journey, but on this second anniversary of Connor's diagnosis, I'm just enjoying the fact that he is still here with us and he feels great. I'm enjoying each and every day with him. He's still got so much fight left in him. We're going to keep fighting as long as God gives us the ability to do so.
As for Houston, we now have some dates. Next Wednesday and Thursday, Connor will have another CT scan and MIBG scan. PLEASE PRAY THAT THE MIBG SCAN SHOWS THAT THE BONE DISEASE HAS DECREASED. PRAY FOR GUIDANCE FOR THE DOCTOR'S SUGGESTED TREATMENTS FOR CONNOR. SHE WILL MAKE HER DECISION BASED ON THESE SCANS. Connor's counts have started coming back up. PLEASE PRAY THAT HIS COUNTS WILL CONTINUE TO RISE. PRAY THAT GOD WILL STRENGTHEN HIS BONE MARROW.
Also, the surgery is scheduled for June 27. The surgeon in Houston (DR. Nochtern) is going to contact Dr. Shamberger in Boston and get his opinion on the tumor in the abdomen. The surgeon may start with the abdominal tumor and try to get more out. He said he would slowly, methodically try to get it all out. He would let Connor set the pace. If he has to work on the abdominal tumor in 2 surgeries, he will. He'll try until it is impossible to keep trying. Then, he'll move on to the chest tumors. Unlike the surgeon in NY, he will resect the tumors in the chest even if he cannot resect the entire abdominal tumor. He will not leave them in Connor. All we are asking of them is that they give Connor the best chance possible. Leave no stone unturned, so to speak. We'll keep fighting this as long as they keep helping us. PLEASE PRAY FOR GUIDANCE FOR THIS SURGEON. GUIDE HIM AS TO WHICH TUMOR TO START WITH AND GUIDE HIS HANDS DURING THE SURGERY. PRAY FOR OUR GUIDANCE. WE WANT TO FOLLOW GOD'S DIRECTION FOR CONNOR. Thanks for all your prayers.
"Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." Lamentations 3:21-23
"Never will I leave you, never will I forsake you." Hebrews 13:5
Joy Cruse
Thursday, May 10, 2007 9:06 AM CDT
I'll give a brief update today about the meeting with Dr. Russell in Houston. It was great. I loved Dr. Russell and the staff at Children's Hospital in Houston. She is recommending 2 things to start with. First of all, Connor needs to repeat a few tests/scans to see where he is right now. Then, she can recommend a drug regimen that will be best for him. Whatever the regimen is, she wants to prescribe something that will let his bone marrow recover.
Secondly, they would like to resect the tumors in his chest very soon. Yeah! She said, "We need to get these bad dogs out of there." I"m all for that. This is what we were hoping they would do in NY, start with the chest tumors. We felt like other doctors were giving up on Connor, and all we were asking for is that they give him the best chance to beat this cancer. Let's get rid of as much of the cancer as possible. All you have to do is look at Connor and you can see he's not out of the game yet. He's still got a lot of fight in him and God's in control of this game, anyway. They are talking with the surgeon/staff in Houston and they will get back with me on a date for these 2 items.
Thanks to Cousin Julie for letting us stay with her. We hope you enjoyed watching "The Incredibles" with Connor. Also, thanks to Jeff Reeter for putting in a good word for us at Children's in Houston and for driving us to the airport. We love you guys!
JOY
Tuesday, May 8
We have an appt with Houston this Thursday with Dr. Russell. PLEASE PRAY THAT SHE CAN GIVE US SOME GOOD DIRECTION. We need a new path that does not involve such toxic chemo and she's known to have other ways to combat this disease. I've heard great things about her and I'm looking forward to meeting her.
About the surgery/surgeries, I don't know what God has in store for Connor in that respect. We will continue to seek Him and see where He guides us. When Connor's counts rise, we may contact NY again or we may contact Boston to see if the surgeon there would go back in and try to get the tumors out of the chest. Or maybe we'll wait until the bone disease is gone/much better. I'm curious to see what Dr. Russell in Houston says about further surgery with Connor.
Connor is feeling great. He was a monkey in the Kindergarten "Circus" show last night. What a great role for him. Connor said the teachers chose a monkey for him, because he's so goofy and silly. Isn't that true? Hopefully, his counts are rising. PLEASE CONTINUE TO PRAY THAT HIS COUNTS RISE. Today, we should find out today how they are doing. By the way, we forgot to say Happy Birthday to Tait last Wednesday. "HAPPY BIRTHDAY, DADDY!"
PLEASE PRAY THAT GOD WILL STRENGTHEN CONNOR'S BONE MARROW AND THAT IT WILL BE CLEAN OF CANCER. I'M SURE THEY'LL DO ANOTHER BONE MARROW BIOPSY SOON. ALSO, PRAY FOR GOD'S COMPLETE HEALING, USING WHICHEVER PATHWAY THAT GOD CHOOSES FOR CONNOR.
I know that as we continue down this journey, options will become fewer and less effective. I've already heard from many doctors how challenging Connor's case is and how his odds aren't that great right now. Refractory disease is more difficult to get rid of then the disease he had when he was first diagnosed. As modern medicine offers us less options, we will then have to rely that much more on God's healing power. As a doctor recently told me, he has seen many miracles in his office lately. He's seen these miracles when God has taken his patients over and beyond what modern medicine can do. Thanks, Dr. Gonino. That is what we are counting on for Connor. WE SO APPRECIATE YOUR FAITHFUL PRAYERS FOR HIM.
PRAY FOR CONTINUED STRENGTH FOR OUR FAMILY. PRAY WE CAN BE A LIGHT FOR OTHERS WHO TRAVEL ALONG THIS WEARY, DARK ROAD ALONG SIDE US.
"Do you not know?
Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
he will not grow tired or weary,
and his understanding no one can fathom.
He gives strength to the weary
and increases the power of the weak.
Even youths grow tired and weary,
and young men stumble and fall;
but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint."
Isaiah 40:28-31
Thanks again for your prayers. Please continue to pray for Patrick Rider as he is finishing his first transplant (We may get to meet him and his family this Thursday in Houston). Also, pray for Grayson Bradshaw as he is about halfway finished with his first transplant. Pray for Alex Podeszwa next week when he has another MIBG scan. Pray that this new treatment in Houston is working to kill the disease in his bones. (Connor may start this same treatment soon). Praise God that Alaina and Bronson are still NED (No Evidence of Disease) - those words are so powerfully wonderful. Thanks for your prayers.
In Christ,
Joy
Monday, April 30, 2007 3:31 PM CDT
We tested Connor's blood today and his platelets actually decreased. The surgeon in NY personally called me and told me that he is postponing Connor's surgery indefinitely. This kind of surgery is very serious and Connor's platelets need to be much higher. The time needed for his counts to rise for surgery may be too long of a period for Connor to go without treatment.
So, we are left with a new crossroad. Do we continue to go forward with this chemo regimen, which is obviously becoming more toxic to Connor's bone marrow, or do we look for more options in treatment? We are trying to set up a meeting with a oncologist in Houston, who is very well equipped to offer some other types of treatment that are used in children with Connor's specific prognosis (cancer in the bones and tumors still evident). She uses meds other than high dose chemo, which will give Connor's bone marrow the break that it needs.
PLEASE PRAY THAT WE CAN GET IN TO SEE HER QUICKLY AND THAT SHE WILL HAVE SOME GOOD DIRECTION FOR US.
As for the surgery, we have been praying specifically that God would control the situation and make it clear if we are supposed to go forward with it. My fear was that the surgeon would open Connor up and he would not be able to do anything more. We have been praying for God's direction and we feel like this was a big arrow from God changing our direction. Are we disappointed or sorry that the surgery will not take place now or maybe ever? No, because we prayed that God would be in control of this and we have to believe that this is part of his plan. Who knows, maybe after his bone marrow gets a break from these rounds of chemo, his platelest will be back to a normal range and we will resume these plans for surgery later. We'll see what God has in store for us. Thanks again for your faithful prayers!
JOY
Sunday, April 29
Fear.
It is a strong emotion. It can render you speechless. It can make a grown man cry. It can make you unable to move. It can consume your thoughts. Fear can make you nauseated. It can make the most tired and weary unable to sleep. It can alter your perception of reality. Fear can control your world, if you let it.
As we walk through this daily fight with cancer, many fears come to mind. Will he make it through the surgery? Will the surgeon get all the cancer/all the tumor? Will the chemo kill all the cancer in his bones? How will the next scan/report look? Will his platelets rise? It is hard to keep these thoughts at bay while I am sitting alone in the waiting room (sometimes all day) waiting to speak with a doctor. By the time I get to see the doctor, the ball in the pit of my stomach has doubled in size. Then, I have to put on a happy face for Connor. I can't let him see the fear as it crosses my face. In moments like these, I have to hold on so tightly to God or else I feel like I will drown. I often have to remind myself of these verses.
"For God has not given us a spirit of fear, but of power and of love and of a sound mind. 2Timonty 1:7
"He will have no fear of bad news; his heart is steadfast, trusting in the Lord."
Psalm 112:7
"The Lord is my light and my salvation ---
whom shall I fear?
The Lord is the stronghold of my life ---
of whom shall I be afraid?"
Psalm 27:1
"Why art thou cast down, O my soul? And why art thou disquieted within me? Hope in God: for I shall yet praise Him, who is the health of my countenance, and my God." Psalm 43:5
Fear not, for I have redeemed you; I have summoned you by name, you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk throught the fire, you will not be burned, the flames will not set you ablaze. For I am the Lord, your God, the Holy One of Isralel, your Savior."
Isaiah 43: 1-3
Now may the Lord of peace himself give you peace at all times and in every way. The Lord be with all of you." 2 Thessalonians 3:16
"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid."
John 14:27
"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." Isaiah 41:10
"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."
John 16:33
As we approach the surgery, please pray that WE WILL HOLD ONTO THESE PROMISES IN THE BIBLE. PLEASE PRAY THAT THE SURGEON WILL BE ABLE TO GET ALL OF THE TUMOR OUT. PRAY THAT HIS PLATELETS WILL RISE QUICKLY SO THAT THE SURGERY CAN REMAIN ON MAY 4. PRAY THAT GOD WILL GUIDE THE SURGEON'S HANDS AND THAT HE WILL KEEP CONNOR SAFE. PRAY FOR COMPLETE HEALING.
Thanks for all your prayers and support. Thanks for all of you who ate at Purple Cow a couple weeks ago. We raised over $1300 for lunch for life. We hope and pray that this research will help find a cure for neuroblastoma.
Alaina is doing well after her second transplant and she has no evidence of disease. Praise God! Thanks for your prayers. Patrick Rider is halfway through his transplant and Grayson is about to start his. Alex Podeszwa is still battling the cancer in his bones. Keira Bowman is still undergoing chemo in the early stages of her fight against neuroblastooma. Please continue to pray for these children.
In Christ,
JOY
Tuesday, April 24, 2007 8:39 AM CDT
Wow! what a wild week. We just found out that the surgery is off Wed! April 25. The Doctor called Joy and told her it was off for a few weeks due to Connor's blood counts. What is hard is she is up there now in NYC and I was on my way as well as Connors teachers etc and friends to be there during the surgery. So, it looks like May 4 is now the date. Please pray for patience for us and continued healing for Con Con. Thanks to all who are helping us as a family get through this with prayer, babysitting, meals, etc. Be in touch,
Tait
Sunday, April 22, 2007 12:41 AM CDT
Good morning! Today Joy and Connor and MacKenzie and Carson and Joys aunt are in NYC seeing the sights. They left Friday morning to a wonderful surprise. As they left our neighborhood the families from Prestonwood Christian School and Church were out with signs, cheers, and love for my son. What a gift to encourage a six year old boy to fight. Fight for life and live life to its fullest,the way God intended. Thank you to the families who put this together, and for your love, time, energy to do such a wonderful thing. It made all of them feel so special! I leave Tuesday morning to NYC for this first of three surgeries.
The surgery is wed. morning -please pray for a perfect surgery and for God to guide the Doctors hands. And for God to continue to bless our little boy and give Joy and I the strength to continue this fight.
Without friends like you and the body of believers praying for us; we would be in a totally different place. Thank you for your love, support, faith, prayers and please continue to lift up this little boy for total healing and for us during this difficult week. Thanks and God Bless. Tait
Saturday, April 14, 2007 10:59 PM CDT
Please join us tomorrow at the Purple Cow restaurant in Plano from 11:00-
9:00. 15 f the revenue will go to the Lunch For Life organization, which raises money for neuroblastoma research. If you can't make it tomorrow, the event will continue through Wednesday. Thanks for your participation.
Connor had a great week this week. PLEASE PRAY THAT HE CONTINUES TO GET STRONGER FOR THE SURGERY ON APRIL 25. PRAY THAT GOD WILL GUIDE THE HANDS OF THE SURGEONS AND THAT IT WILL BE A SUCCESSFUL SURGERY. If the surgeon does not get all or most of the tumor out, he may chooose not to resect the tumors in the chest. That is another reason why this surgery is very important. PLEASE PRAY THAT THE CHEMO WILL KILL THE CANCER IN THE BONES AND ANY OTHER CANCER CELL. PRAY FOR HIS COMPLETE HEALING
PLEASE PRAY THAT TAIT AND I WILL WAIT UPON THE LORD FOR HIS PERFECT TIMING IN ALL OF THIS. I like this paragraph from Jim Cymbala's book "Fresh Faith."
Many of our struggles with faith have to do with timing. We believe, at least in theory, that God will keep his promises---but when? If the answer does not come as soon as we expect, fear begins to assault us, and then soon we are tempted to 'throw away our confience,' ignoring the fact that 'it will be richly rewarded' (Hebrews 10:35). Many times in life, God waits while a situation goes from bad to worse. He appears to let it slip over the edge, so that you and I say, 'There's no way now for this to work out.' But that is the point when the omnipotent God intervenes in our hopelessness and says, 'Oh, really? Watch this...!' Sometimes, when we get into emergencies and the situation seems totally hopeless---it's actually a setup. God wants to do something great. He wants to demonstrate his power, so that his name will be praised in a new and greater way."
"Wait for the Lord; be strong and take heart and wait for the Lord." Psalm 27:14
Please pray for our new friends, Keira Bowman (www.keirabo.blogspot.com) and Patrick Rider (www.caringbridge.org/visit/patrickrider) Keira is an 11 month old who was diagnosed with neuroblastoma a month ago. She is currently undergoing chemo. Patrick has neuroblastoma also and has just begun his first Bone Marrow transplant. Alaina is finishing up her second transplant next week. Praise God! Grayson is getting ready for his first BM transplant next month and Alex is trying a new treatment to try and clean his bones of the cancer.
Thanks for your prayers.
Joy Cruse
Saturday, April 7, 2007 9:43 PM CDT
Connor finished his chemotherapy yesterday and he's tolerating it very well. Just a little vomiting now and I'm sure the diahrrea will come tomorrow.
PLEASE CONTINUE TO PRAY FOR HEALING, CONNOR'S BONE MARROW, THE SURGERY ON APRIL 25TH AND OUR CONTINUED STRENGTH. PRAY THAT WE WILL BE A SOURCE OF STRENGTH FOR OTHERS, ALSO.
For those of you who live in the DFW area, I wanted to let you know about an opportunity to help kids like Connor have a better chance at survival. The Purple Cow restaurant has agreed to donate a percentage of their profits on certain days in April to the Lunch For Life organization (www.lunchforlife.org). Lunch For Life is an organization that raises money for neuroblastoma research. All their funds go to CNCF (Children's Neuroblasoma Cancer Foundation). If you go to the Plano location at Spring Creek and Preston on Sunday, April 15-Wednesday, 18, and buy a meal for your family, a percentage of your money will go towards finding a cure for Connor and the other children we've met along this journey. The Dallas and Fort Worth Stores are also participating on Wednesday, the 18th.
If you don't live in the area, you can go to the website and donate some money, also. Connor's name is registered on their website. The premise of Lunch For Life is they ask everyone to give up their lunch money and donate it in the hope of finding a cure. There is a quote on the website that says... "Right now, this second, somewhere in America, there are seven children fighting (against cancer) for their lives who won't live through the day. We can do better."
Thank you so much for your help in this matter. We're hoping these researchers will find a cure before time runs out for some of these children.
I heard this song on the radio by Mercy Me today. It's called "Bring The Rain." I thought what awesome words they were. I want these words to be my prayer. I hope my attitude matches the words of this song....
"I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain
I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain"
Have a Blessed Easter!
Joy Cruse
Saturday, March 31, 2007 4:07 PM CDT
Tuesday, April 3
I just wanted to ask you, my fellow prayer warriors, to pray for an infant girl who is fighting for her life. Her name is Lanie Lewallen. I grew up with her father. She was born a few days ago with a hole in her diaghram and has had surgery to try and fix the problem, but her lung collapsed. She is now on a heart/lunch machine to keep her breathing. I'm not sure of all the specifics, but I do know that she really needs our prayers. Please pray for Lanie and for God's healing power.
Joy
Connor has had a great week. He had a field trip to the Planetarium. He had another baseball game and he had a great game. He got the game ball. They give it to the MVP. He was so excited. We were so proud of him. It's so great seeing him feel so good. It's hard to take him back to the hospital on Monday for more chemo to knock him down again, but we know he'll bounce back.
PLEASE PRAY THAT THE CHEMO WILL FINISH OFF THE CANCER IN HIS BONES AND ELSEWHERE. PRAY THAT HIS BONE MARROW WILL CLEAR AGAIN. I don't know yet if the cells were alive or mature, but either way, it's best if they are gone! PLEASE PRAY FOR THE SURGERY ON APRIL 25TH. PRAY THAT GOD WOULD GUIDE THE SURGEON'S HANDS, AND PRAY FOR GUIDANCE SO THAT WE KNOW FOR SURE THAT THIS IS THE PATH GOD WANTS US TO FOLLOW. PRAY THAT WE WOULD BE A LIGHT FOR MANY TO SEE DURING THIS DARK JOURNEY. A friend of mine (thanks, Valerie Goodwin) said something that really hit home with me. She said that our light shines brightest when we are in the dark. We can make the biggest impact when we are enduring our trials. May our light shine brightest during this dark time.
Connor was in the Children's Cancer Fund Fashion Show yesterday. It was so moving. The children were so beautiful. Their fighting spirits just emanated from them. Connor got to walk down the runway with Troy Aikman and Roger Staubach. Daddy was excited about Roger Staubach. He was one of Tait's heroes when he was a child. Connor was such a "cool cat" on the runway. He had his shades on and his hands in his pockets. We were all laughing at him as he strutted down the runway. When did he become so cool? Haha! He must get that from his MOM. Look for pics of the fashion show on the website soon.
Thanks Karen Dodson for donating your mural painting skills for the Fashion Show auction. Also, thanks to my Dad for donating your famous hand-crafted patio rocking chairs and thanks Northwestern Mutual for donating the Suite for the Dallas Stars Game. We appreciate your help in fighting children's cancer! Hopefully, together, we can find a cure.
I love this song, "I Will Lift My Eyes" by Bebo Norman. It reminds me to look to God for help. I should keep my eyes focused on Him, not on my daily trials.
God, my God, I cry out
Your beloved needs You now
God, be near, calm my fear
And take my doubt
Your kindness is what pulls me up
Your love is all that draws me in
I will lift my eyes to the Maker
Of the mountains I can't climb
I will lift my eyes to the Calmer
Of the oceans raging wild
I will lift my eyes to the Healer
Of the hurt I hold inside
I will lift my eyes, lift my eyes to You
God, my God, let Mercy sing
Her melody over me
God, right here all I bring
Is all of me
Cause You are and You were and You will be forever
The Lover I need to save me
Cause You fashioned the earth and You hold it together, God
So hold me now
"I lift up my eyes to the hills - where does my help come from?
My help comes from the Lord, the Maker of heaven and earth."
Psalm 121:1-2
In Christ,
Joy
Thursday, March 22, 2007 1:47 PM CDT
I don't have a lot of new info to add to the journal this week. We are still waiting on clarification on the bone marrow (live NB cells or mature NB cells?). We should find out next week. NY mailed the results of the bone marrow biopsy to Dallas and we're just waiting for Dallas to receive them.
The surgery is still on. The date is April 25. I tried with as much finesse as possible to persuade the doctors/surgeons to go after the tumors in the chest first, but I guess they didn't feel like my expertise was enough to warrant a change of plans. The surgeon still plans to resect what is left of the abdominal tumor first. PLEASE PRAY THAT THERE WILL BE MUCH SUCCESS WITH THIS SURGERY. GUIDE THE SURGEON'S HANDS, LORD. PRAY THAT THIS DECISION IS DIRECTED BY GOD. If they cannot resect this tumor or most of it, they may choose not to resect the tumors in his chest. A lot depends on the success of this surgery. I have to believe that God would not let them cut Connor open again for surgery that is a failure. There must be a reason the surgeons want to start with the abdomen first. PRAY FOR DIVINE INTERVENTION FROM GOD WITH THIS SURGERY. I DON'T EVEN KNOW HOW TO SPECIFICALLY PRAY, EXCEPT TO LEAVE IT ALL IN GOD'S HANDS.
Connor has rebounded well from the last round of chemo. He feels great, minus a little vomiting and diarrhea. I've never known that to keep Connor down for long. His first baseball game is Saturday and he's looking forward to it. PLEASE PRAY THAT THIS CHEMO CONTINUES TO WORK AND THAT IT IS KILLING ALL THESE CANCER CELLS IN THE BONES AND ELSEWHERE. I so look forward to the day when the doctors finally say that the bones are clean. I think I will hug every doctor in the room. They'll forever think of me as that crazy mom from Texas.
Next Friday, Connor is in a Fashion Show that benefits the Children's Cancer Fund. Look for an article in the Dallas Morning News next week that will feature Connor and some of the other children who are participating in the Fashion Show. My family from Oklahoma is coming to watch the show along with our family here in TX. By the way, Happy Birthday (belated) to my nieces Sheena and Codi. And Congrats to the Lomega Girls Basketball Team (my alma mater) for winning the OK State Championship a couple weeks ago.
I have to admit that last week I was feeling weary in this long race, but friends of mine (Loren and Stephanie Hsiao) gave me a book called "Fresh Faith," written by Jim Cymbala. One chapter in particular was a great reminder that we have to lean solely on the Lord for our strength. Our own wellspring of strength often times comes up empty....
"Paul (in II Corinthians 5) has found the secret that we were created to be receiving vessels only - not having any strength in ourselves but merely depending on God to fill us hourly with all we need. Paul also knew that God uses trouble and trials of all kinds to heighten that sensitivity so that by faith we can use divine resources.
Don't give up today because you feel weak and overwhelmed - that's the very place where divine power will uphold you if you only believe and call out to the Lord in total dependence. Childlike faith in God is not only what pleases him but is also the secret of our strength and power."
It is human nature for us to want to fix things; be in control. If we just work hard enough for something, it will happen. In this long journey, I find that there is not much I can do (in my own strength) to fight this beast called cancer. Sure, we're trying to get the best treatments for Connor and we try to keep him as healthy and happy as possible. But, ultimately, his outcome rests in God's hands. I'm learning to rest in that promise. I have to surrender Connor over to God every day and give up on my weak attempts to control the situation or fix everything. I'm just not capable of it.
When I try to take the reigns back from God, I start to feel this heavy weight on my shoulders. I feel so loaded down, because I can't do it all. When I give it all back over to him, I feel so relieved. I actually feel lighter and free. I can tell the burden has been removed and He is carrying it now.
"Therefore, I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, insults, hardhips, persecutions, and difficulties. For when I am weak, then I am strong." 2 Corinthians 12:9-10
Please continue to pray for our friends Alaina (starting 2nd transplant), Alex (starting new treatment to kill the cancer in his bones) and Grayson (receiving treatment to clean his bone marrow).
Thanks again for your prayers and words of encouragement.
Joy
Thursday, March 15, 2007 1:26 PM CDT
We have some of the results from the bone marrow biopsy. There was neuroblastoma cells present, but we don't know yet if they were mature or alive. We are waiting on the test results to get mailed to Dallas. We don't know what to make of this. What does this mean? Well, he hasn't relapsed, because he's never been in remission. If the cells are alive, the antibody treatment in NY works very well on bone marrow. But, we have to get the bones clean first. If they are mature, does that mean that some of these dead cells from the bones/tumors are circulating back into the bone marrow because Connor's body is having a hard time excreting all these dead cells/toxins? We get different opinions on this. Very frustrating! We were praying so hard for a CLEAR, CLEAN bone marrow biopsy. I guess this means that our mountain to climb may be a little bigger now.
Also, the surgeon wants to try and resect the abdominal tumor again on April 25. I guess he thinks he may have a better shot at it. We've e-mailed the doctor in NY to see if they would start with the tumors in the chest, and they want to start in the abdomen. If they cannot resect all/most of the abdominal tumor, they might not try and resect the chest tumors at all. Oh, how I wish they would start with the chest tumors. They are much easier to resect. Tait and I are having a hard time with this recommendation from the surgeon. We've been praying for months that God would guide these doctors and surgeons. I pray that this is the direction God wants us to take.
PLEASE CONTINUE TO PRAY THAT GOD IS DIRECTING THESE SURGEONS AND DOCTORS. PLEASE PRAY THAT THE CHEMO WOULD KILL OFF THE REST OR THE CANCER IN THE BONES/BONE MARROW AND ANY OTHER CANCER CELL LEFT. PRAY THAT THE CANCER DOESN'T GET RESISTANT TO THE CHEMO. PRAY FOR GUIDANCE FOR TAIT AND MYSELF.
This week has been hard. We would really like some good news for Connor. It seems like it's been such a long time since we've had some good news. Even the news in NY that the bones are better was delivered in a way that the news was discouraging because we thought the cancer was dead in the bones. Tait and I are feeling weary right now in our race. I feel like some good news would be like a needed shot of adrenalin. PLEASE PRAY THAT GOD WILL COMFORT US AND STRENGTHEN US.
The one good thing is that Connor is doing well. He's tolerating the chemo well. He looks great and is enjoying himself. He's such a joy.
"Lord, if You are willing, You can make me clean. And Jesus said these simple words, I am willing; be cleansed." Matthew 8:2,3
"But those who hope in the the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will wak and not be faint." Isaiah 40:31
Thanks for praying,
Joy Cruse
Friday, March 9, 2007 2:33 PM CST
We don't have any new information yet. We are still waiting on the results of the bone marrow biopsy and the opinions of the surgeons. PLEASE PRAY THAT THE BONE MARROW WILL STILL BE CLEAN. ALSO, PRAY THAT GOD WOULD GUIDE THE DECISIONS OF THE DOCTORS AND SURGEONS.
We are enjoying Spring Break and a few days at Grandma and Grandpa's Ranch. MacKenzie, her friend, Hannah, and the boys are outside on the Gator with Dad and Grandpa. They are gathering wood for the campfire, for the wienie roast and marshmallow roast tonight. Connor needed a break from scans, test, and chemo. Connor will start the chemo Monday. PLEASE PRAY THAT THE CHEMO WILL KILL THE CANCER IN THE BONES AND ANY OTHER CANCER CELL. PRAY THAT GOD WILL PROTECT CONNOR'S BONE MARROW FROM THE CHEMO.
When we got the discouraging news last week, I mentioned to my mom that it would be so nice to have some evidence from God (like a letter from God) that said Connor would be healed. The letter might say that this journey will take longer than expected, but he will be healed. Then, the road to the finish line would be long, but it would be much easier to manage.
Mom then read to me these words from Joni Eareckson Tada, from her book, "Pearls of Great Price."
"We say to God, 'If you don't mind, please show me where I am going. I don't need to see the whole road, but at least a little bit.' We think our faith has to be supported by a bit of evidence. A hint, a signpost, a whisper...something to give us a clue as to what God is doing. We wrongly assume that faith is the ability to take a couple of puzzle pieces and be able to envision the entire picture. Not so. Faith that must be supported by the five senses is not genuine. Jesus said to doubting Thomas, 'You have believed me because you have seen me, but blessed are those who have not seen and yet believe.'
Our insistence upon discerning what's up ahead is natural, but it is a hindrance to real faith. It's why God constantly encourages us to trust him in the dark (Isaiah 50:10) True faith means resting in who God is. Trust Him with what's up ahead."
PRAY THAT TAIT AND I WILL CONTINUE TO TRUST GOD WITH WHAT IS UP AHEAD. Please continue to pray for our NB friends. Alaina just finished her first transplant and is home recovering, getting ready for the second transplant. We need to pray for Grayson, that his bone marrow will clear. Also, pray for Alex. He is starting new treatment to try and get rid of the residual cancer in his bones.
Thanks again for all your prayers.
Joy Cruse
Thursday, March 1, 2007 10:04 PM CST
We are back home from New York now and the trip was not what I was expecting. The MIBG scan in New York showed that there is still cancer in Connor's bones. It is improved from last September, but it is still there. What happened with the scan in Dallas in November - the one that showed the cancer was "resolved"? Great question! They think it is possible that they did not inject enough dye in Connor, so the bones did not absorb enough dye to show up on the scan. Needless to say, whatever the reason is, we are still in a disappointing situation.
New game plan... more chemo. The same chemo he has done for the last four rounds. Hopefully, the chemo will continue to eat away at the cancer until it is gone. At that point (or when there is only a little cancer left), we could start the antibody treatment in New York.
The question we still do not have answered is "what about the surgery?" We were informed that Connor would need at least 2 more surgeries. The tumor wrapped around his spine is mainly on the right side of the chest and the tumor around the aorta is obviously on the left side. They can't open up both sides of the chest at the same time, so that would be two separate surgeries. They may still try to go back in the abdomen to see if they can get more out there. They feel children have a much better survival rate if you can get all or most of the tumors out. The question the surgeons have to answer is "is it worth the trauma to Connor's body for 2 or 3 more surgeries if they cannot get all the tumors out?" I say "yes!", but I don't know if they will agree with me. They also have to consider the fact that Connor still has disease present. They have to decide if Connor should undergo surgery if he still has active disease. If the chemo will not kill the remaining cancer, than they have put Connor through unnecessary surgery.
If the surgeons agree to the surgery, they may alternate his chemo with each surgery...two rounds of chemo and then one surgery, two rounds of chemo and then another surgery, etc...
I almost felt sorry for Dr. Kushner. He always has to deliver bad news to me. He was trying to tell me the options for Connor, and at the same time explain to me how limited his options are. Connor's options are also limited because he does not have any more stem cells left from the two bone marrow transplants. There are other options out there if he had any stem cells left. At least we are not faced with a lot of decisions to make. We pretty much have only one path laid out for us.
The one great thing about Connor is how great he looks and feels. Dr. Kushner kept commenting on his energy and look of health. He said when you look at Connor's MIBG and CAT scans, you expect to see a sick looking child walk through the door, and then in walks Connor. He looks great and he feels great. Dr. Kushner is glad to see that the chemo has not worn him down. Good thing, since he's got more rounds to go.
Now, here come the prayer requests. PLEASE PRAY THAT THE BONE MARROW IS STILL CLEAN (We should have that report next week). PRAY THAT THESE NEXT FEW ROUNDS OF CHEMO WILL FINISH OFF THIS CANCER IN HIS BONES. PRAY THAT GOD WOULD PROTECT CONNOR AND HIS BONE MARROW FROM THE EFFECTS OF THE CHEMO. PRAY THAT THE SURGEONS WILL FEEL IT IS NECESSARY TO REMOVE THE TUMORS. PRAY FOR CONNOR'S COMPLETE HEALING. PRAY FOR US TO BE A LIGHT TO SO MANY OTHER FAMILIES. PRAY FOR CONTINUED STRENGTH AND STAMINA FOR OUR FAMILY.
"Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith." Hebrews 12:1
I have to admit, it was hard to wrap my mind around this last new development. I do feel weary, frustrated and impatient, and it is hard to continue on this course of more chemo. I feel like each time I get near the finish line, the line keeps getting pushed farther out. But, after the shock wore off, we all decided to get back up again and step back into the ring, or get back in the race. We're ready to fight once more. I just need to remember that God will help us get to the finish line, whenever and wherever it is. Words from Beth Moore's bible study "Believing God" help me to persevere.
"If the primary objective is to show His supremacy, perhaps He might choose to heal instantaneously. If His primary objective to to teach sufficiency in Him or to mature and build faith, I wonder whether He heals through a process or stich-by-stich method. Remember, God is far more interested in our knowing the Healer than He is in the healing. God can be vastly glorified through either objective: showing His supremacy or His sufficiency."
I guess where Connor is concerned, God is showing us His sufficiency. So, we will continue to fully rely on Him.
Thanks for all your continued prayers,
Joy Cruse
Tuesday, February 27, 2007 10:03 PM CST
Thank you so much for your prayers. Connor and I made it safely to New York yesterday. We were worried about the weather, but it is actually quite beautiful here right now. Connor did his CAT scan today and he'll do his MIBG scan and bone marrow biopsy tomorrow. We will also see Dr. Kushner tomorrow to hopefully get some kind of plan for the future. Dr. Kushner examined Connor today and said that he looks very good and it looks like he bounced back very well from the last round of chemo.
We made a quick run to Toys R Us in Times Square to get everyone a souvenier from NY and now we're back at the Ronald McDonald House. I'll update everyone better when I find out what the plans are for Connor.
Thanks again for your prayers. PLEASE KEEP PRAYING FOR CLEAN SCANS AND BONE MARROW, GOD'S GUIDANCE FOR THE DOCTORS, OUR STRENGTH & OUR ENCOURAGEMENT TO OTHERS!
Tuesday, February 20, 2007
Yesterday, we went to the clinic and Connor's counts were really good. This is the best all of his counts have been since before we started these last four rounds of chemo. God answered our prayers to protect Connor's bone marrow from this last round of chemo. PLEASE PRAY THAT GOD CONTINUES TO STRENGTHEN CONNOR'S BONE MARROW.
We'll go to NY next Monday to see Dr. Kushner. AGAIN, PLEASE PRAY THAT THE CAT SCAN AND MIBG SCAN ARE CLEAN. PRAY THAT THE BONE MARROW BIOPSY IS CLEAN. PRAY FOR GOD'S DIRECTION FOR THE DOCTORS. PRAY THAT WE WILL BE A LIGHT TO THE PEOPLE WE MEET, WHO TRAVEL ALONG THIS DARK JOURNEY BESIDE US.
The other day, Connor and I were driving home from the clinic and he was lying down in the seat. I aked him if he felt okay. He said, "Oh yeah, Mommy. I'm always okay." I was just amazed! How can a kid who has gone through so much over the last 21 months, and who just visited the clinic for the 200th(?) time, have such a positive, wonderful attitude? The only answer I can think of is God. Only He can supply this attitude of gratefulness in the midst of all these circumstances.
I think I can learn a lot from Connor and his answer. Just last week, I was complaining to Tait that my days are taken up with trips to the clinic, hospital, ENT doctor for Connor's continuous ear infections, audiologist for Connor's hearing aids, chiropractor/physical therapist, and then dentist and pediatrician for all the little routine stuff. Then I realized how I was looking at it all wrong. I should be grateful that CONNOR IS STILL HERE FIGHTING. Thank you, God, that I can take Connor to all these doctors who help Connor fight this cancer and any other illnesses, and who help make him stronger. Thank you, God, for another day with Connor, whether it is in the doctor's office or at home in the back yard. I am just grateful that we can be together. Connor has just taught me an important lesson.
"In everything give thanks; for this is the will of God in Christ Jesus concerning you." Thessalonians 5:18
Words from Frances J. Roberts...
"Rejoice in the Lord always, for as you rejoice and give thanks, you release heaven's treasures and shower upon your head the blessings of a delighted Father. Nothing so thoroughly delights the Father's heart as the praises of His children.
For praise exercises the heart toward gratitude, and gratitude nurtures contentment, and you may know for a certainty that no fruit ever appears on the tree of discontent.
Out of praises come courage, faith, strength, optimism, clarity and peace. Out of praises come health and happiness and the soul satisfaction men seek in the world and do not find."
I pray that we will all learn to be thankful in all circumstances.
Please continue to pray for Alaina, who is still in the hospital for her bone marrow transplant. Pray her counts start rising. Pray for Grayson, who is starting his 5th round of chemotherapy. Also, pray for Alex's parents as they make decisions about his next course of treatment.
Thanks again for checking in on Connor and thanks for all your prayers.
Joy Cruse
Tuesday, February 13, 2007 4:05 PM CST
Connor is doing well this week. The digestive problems with the chemotherapy are over now. We had a scare in the middle of the week where he was experiencing pain in his chest area. We thought we would have to repeat scans to see what the problem was. It was actually gastritis. He took some prevacid for 3 days and the pain is completely gone now. Praise God!
We're just watching his counts for the next couple weeks... so far so good. Connor is actually just enjoying some time re-energizing and some time away from the clinic. Next week, he'll do an echocardiogram to check his heart and make sure there was no damage from the chemo. PRAY THAT THE TEST SHOWS THAT HIS HEART HAS NO DAMAGE.
We'll head to New York the last few days of February to meet with the doctor there and rescan. They'll also do another bone marrow biopsy on Connor. PLEASE PRAY THAT THESE TESTS COME BACK CLEAR, CONCISE AND CLEAN. PRAY THAT THERE IS STILL NO CANCER IN THE BONES OR BONE MARRIOW. PRAY FOR GUIDANCE FOR THE DOCTORS AND GUIDANCE FOR US. PRAY THAT GOD WILL COMPLETE THE HEALING HE HAS BEGUN IN CONNOR. PLEASE PRAY THAT WE WOULD BE AN EXAMPLE OF GOD'S LOVE FOR ALL THOSE WE MEET WHILE ON THIS JOURNEY.
Of course, I would like for all of these treatments to be over, but God must have a reason for this to continue. There may be a family we need to meet in New York or maybe there are other people we would not come in contact with if we were not still getting treatment. Whatever the reason is, I am so glad that God is in control and I know that He has planned this whole journey for Connor even before He was in born. Everything that happens is part of His plan. I find such comfort in knowing that God KNOWS Connor intimately and He is always watching over Connor. I can rest knowing that we will never be beyond His reach.
"O Lord, you have searched me and you know me.
You know when I sit and when I rise;
you perceive my thoughts from afar.
You discern my going out and my lying down;
you are familiar with all my ways.
Before a word is on my tongue
you know it completely, O Lord.
You hem me in --behind and before;
you have laid your hand upon me.
Such knowledge is too wonderul for me,
too lofty for me to attain.
Where can I go from your Spirit?
Where can I flee from your presence?
If I go up to the heavens, your are there;
if I make my bed in the depths, you are there.
If I rise on the wings of the dawn,
if I settle on the far side of the sea,
even there your hand will guide me,
your right hand will hold me fast.
For you created my inmost being;
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
your words are wonderful, I
I know that full well.
All the days ordained for me
were written in your book
before one of them came to be." Psalm 139:1-10,13,14,16
Please pray for Alaina as she is in the middle of her transplant. Pray for Alex's parents as they decide his next round of treatments (antibody in NY?), and pray for our new friend Alexa Aigner. She has neuroblastoma and they are running out of options for her.(www.caringbridge.org/visit/alexaaigner).
Thanks again for all your prayers.
Joy
Tuesday, February 6, 2007 8:34 AM CST
I'm always so humbled when God takes such great care of Connor. This round of chemo has been so much easier than the last two. He's only thrown up 4 times. His diahhrea is mild. He's only lost one pound and he's still eating very well. His energy level has also been impressive all weekend. He felt so good that we were able to go see the "Monster Jam" (monster trucks) on Friday night. The boys loved it. It was so loud! Connor didn't seem to mind the noise. I guess there are some benefits to hearing loss. It's a good thing he wasn't wearing his hearing aids.
We will be watching his platelets closely to make sure he doesn't need any platelet transfusions. So far, so good. We'll check it every Monday. We also spoke with the doctor in New York. We will be going to NY the last week of February to repeat all the tests. Connor will repeat the MIBG scan and CAT scan. He will also repeat the bone marrow biopsy. PLEASE PRAY THAT THESE TESTS WILL HAVE CLEAR, CONCISE AND CLEAN RESULTS. PRAY THAT THE CANCER IS STILL GONE IN THE BONES. PRAY THAT THE BONE MARROW BIOPSY SHOWS NO CANCER CELLS, LIVE OR MATURE. PRAY THAT THE DOCTOR'S GUIDANCE FOR CONNOR COMES STRAIGHT FROM GOD. PRAY THAT GOD WILL PROTECT CONNOR'S BONE MARROW FROM ANY HARM FROM THE CHEMO AND THAT GOD WILL RESTORE HIS BONE MARROW. PRAY THAT THIS LAST ROUND OF CHEMO KILLED ANY LAST CELL OF CANCER.
Thank you so much for your prayers. They have been instrumental in guiding us and carrying us through this journey. Please pray for a new friend of ours, Brandon Bartas. He was diagnosed with a brain tumor in December. He has had surgery to resect the tumor and now he is undergoing radiation and chemo to kill any cancer that may still be there. He and his family would appreciate your prayers. Also, pray for Alaina, (www.caringbridge.org/visit/alaina) as she is starting her bone marrow transplant this week.
As the month of February approached this year, I could not help but remember my friends Elisha Henderson, Kennedy Smith and Nathan Spinks who passed away February of last year. These sweet precious children fought a brave battle against 3 different, scary diseases and then they went HOME to be with the Lord. I know they are rejoicing with Him in Heaven right now. I have also met other children who have gone to be with the Lord since then. I just wanted to ask you to keep praying for these families and their grief and please keep praying for the children who are still fighting bravely. Besides my continuous prayers on the behalf of these families, I want to do more to help. I want to bring awareness to all of you about the statistics of childhood cancers. The number of children diagnosed each year is rising and the funds for research are not anywhere near what they should be. I have added some information to the website that will remain for a few months. I'm hoping we can find some way to help find cures for these precious children.
Whenever I hear the song, "Cry Out To Jesus," from Third Day, I always think of these families who have lost someone they love.
"To everyone who's lost someone they love
Long before it was their time
You feel like the days you had were not enough
When you said goodbye
And to all of the people with burdens and pains
Keeping you back from your life
You believe that there's nothing and there is no one
Who can make it right
There is hope for the helpless
Rest for the weary
Love for the broken heart
There is grace and forgiveness
Mercy and healing
He'll meet you wherever you are
Cry out to Jesus, Cry out to Jesus."
"I love the Lord, for He heard my voice;
He heard my cry for mercy.
Because He turned His ear to me,
I will call on Him as long as I live."
Psalm 116:1,2
In Christ
Joy
Monday, January 29, 2007 4:15 PM CST
Connor started the chemotherapy today. His platelets were not as high as they were supposed to be, but they decided not to delay any longer. We don't want to give the cancer any chance to grow/come back. We'll deal with his low platelets later, probably with a transfusion if they get that low after chemo.
There is still confusion on those "mature" cells in the bone marrow. I guess we won't get a better picture until he does another bone marrow biopsy. Repeating the scans in a few weeks will help the picture some, too. PLEASE PRAY THAT THOSE MATURE CELLS WILL JUST CONTINUE TO DIE OFF AND DISAPPEAR. PRAY THAT THIS CHEMO WILL KILL OFF ANY LEFT OVER CANCER CELLS. PRAY FOR GUIDANCE FOR OUR DOCTORS. We hope to return to New York in a few weeks to repeat scans and see when we can start the antibody treatment. Connor may have to have the surgery to resect the secondary tumors in the chest first. We'll see what NY says.
I've learned that in the medical community that whenever there is a question about a report, where you can lean towards the negative side or lean towards the optimistic side, doctors tend to be cautious and lean towards the negative side. I understand that that is part of their job, making us realize the downside of the problem and all the negative possibilities. But, I just know that for my sake and Connor's, I have to believe in the positive option available. My FAITH gives me courage to believe in unlikely possibilities and in the impossible and even in miracles. My bible study has started reading "Believing God" by Beth Moore. I want to share some of her words with you that I find very reaffirming that our FAITH is so important.
"Without faith it is impossible to please God" Hebrews 11:6
"That's one reason we may as well accept faith challenges as a fact of life and not be shocked or feel picked on when they come. God brings them to build our faith, prove us genuine, and afford Himself endless excuses to reward us. He delights in nothing more than our choice to believe Him over what we see and feel. Also nothing on earth compares to the strength God is willing to interject into lives caught in the act of believing. "I pray also that the eyes of your heart may be enlightened in order that you may know the HOPE to which he has called you, the riches of his glorious inheritence in the saints, and his incomparably great POWER for us who believe. That power is like the working of his mighty strength which he exerted in Christ when he raised him from the dead." Ephesians 1:18-20 You don't have the need that exceeds His power. Faith is God's favorite invitation to R.S.V.P. with proof.
PLEASE PRAY THAT 'THE EYES OF MY HEART WOULD BE ENLIGHTENED IN ORDER FOR ME TO KNOW THE HOPE TO WHICH HE HAS CALLED ME, THE RICHES OF HIS GLORIOUS INHERITANCE AND HIS INCOMPARABLE POWER." PLEASE PRAY THAT WE WOULD BE A LIGHT TO OTHERS WHO TRAVEL THROUGH THIS DARK JOURNEY ALONG SIDE US.
Thanks again for your prayers,
Joy Cruse
Thursday, January 25, 2007 1:47 PM CST
This evening's update....
I got some clarification on the biopsy this evening. Again, they did not see any live neuroblastoma cells. The pathologist had a hard time differentiating between "mature" and "maturing" on those cells from the bone marrow. I'm doubtful if we'll know for sure. They are going to have some other pathologist look at it and they will try to compare it to the sample taken in New York in Sept. Bottom line is they usually do not see mature cells in the bone marrow. It seems to be a mystery. They usually see these mature cells when they are looking at a tumor biopsy, not a bone marrow biopsy. Also, they usually see these mature cells after treatment, like the chemo Connor has endured since October. Could the chemo could have "matured" the "questionable" cells around the abdominal tumor and then circulated into the marrow???? Possibly? The main thing to watch is whether or not these mature cells die/disappear. That is the usual course for these cells. If they are truly 100 ature, nothing will be produced from them and they eventually die/disappear. PLEASE PRAY THAT IS EXACTLY WHAT THESE CELLS DO....JUST DISSAPEAR/DIE.
Connor is truly the poster child for "gray area" when it comes to this disease. His circumstances are truly confusing, unclear and vexing. What it all boils down to is that it doesn't matter how modern medicine interprets all these tests. God knows what He has in store for Connor and He is in control. I almost feel like God is keeping us in this gray, uncharted territory, so we have to walk by COMPLETE FAITH. So, we'll keep walking, Lord!
This morning's update......
I received some of the biopsy report yesterday, but I had to finish the phone conversation early because my surroundings were to loud. When I called back to get clarification on the report, I was not able to get in touch with the right person. So, I'm still waiting on some questions to be answered, but I'll update you on what I have.
First of all, the biopsy report was negative. There were no active, live neuroblastoma cells in his bone marrow. There were some mature neuroblastoma cells that showed up, and that is where the confusion for me lies. For neuroblastoma cells, if the cell if "mature" it is basically dead. It is not alive and it does not cause any damage. It is basically harmless. Now, the problem is that I want confirmation that the cells were "mature," not "maturing." "Maturing" leads me to believe that there were some live cells recently and they are now dying. If the cells are "mature," than these cells could have been in his bone marrow for a long time (I'm assuming), meaning there is still no new neuroblastoma growth in his marrow. The doctor said it is not uncommon to see some mature cells in the bone marrow, which leads me to believe that these cells have probably been there for awhile. Connor's bone marrow has been clean since September, 2005. I'm just hoping that there was not any new growth there recently.
I'm sorry this is so confusing. I really wanted clarification on all this before I updated everyone, but I need to update while the kids are at school and Mason is taking a nap. I'm not sure when I will get answers. I hope it will be sometime today. When I get some answers, I will update again.
Thanks for all your prayers. PLEASE PRAY FOR SOME CLARITY ON THIS BONE MARROW BIOPSY. PRAY THAT THESE ARE "MATURE" CELLS AND THAT THEY HAVE BEEN THERE FOR AWHILE. PRAY THAT THERE HAS NOT BEEN ANY NEW GROWTH SINCE HIS BONE MARROW WAS CLEAN A YEAR AND A HALF AGO.
I have to admit, I never realized how "gray" all these reports could be. Over the past 20 months, Tait and I have been on a roller coaster ride of emotions just over these test results. Back in September, 2005, there were conflicting reports on his bone marrow, so we did another round of chemo just to make sure. A cat scan showed something in his nasal passages that looked like cancer. During the biopsy, they couldn't find anything. When they resected the tumor, there was that 5 hat they were not sure about. At first, it looked "mature" and then they thought it was not "mature." We thought the bones were clean after the transplants and then we found out last September that the cancer was still alive. It is getting hard to trust the "good" reports that we get. I guess I'm just venting. Because of our frustration, our faith is tested even more. I find the following song a comfort to me today.
"Let Your Mercy Rain" by Chris Tomliin
God, You have done great things.
God, You give grace to the weak.
And bless the broken-hearted.
With a song of praise to sing
You reached down and lifted us up
You came running, looking for us
And now there's nothing and no one beyond your love
You're the overflow
You're the fountain of my heart
So let your mercy rain
Let your mercy rain on us
You're the faithful one
When the world's falling apart
So, let your mercy rain
Let your mercy rain on us.
How deep, how wide
How long, how high
Is your love
Is your love
"Let us then approach the throne of grace with confidence so that we may receive MERCY and find grace to help us in our time of need." Hebrews 4:16
"Rejoice in hope, be patient in trouble, and steadfast in prayer."
Romans 12:12
"Trust in the Lord with all your heart and do not lean on your own understanding. In all your ways acknowledge Him and He will make your paths straight." Proverbs 3:5-6
Thanks again for your prayers. Thanks for praying for Alaina. Her surgery went well and she's recovering nicely.
In Christ,
Joy
Monday, January 22, 2007 3:16 PM CST
We went to the Clinic today to check Connor's blood counts. Fortunately, Connor's counts (especially his platelets) are rising, but they are not high enough to start the chemo. They rose from 30, 000 to 46,000 in a week. They need to rise to 75,000 (or close to it) before they can start the chemo. We will try again next Monday. PLEASE CONTINUE TO PRAY FOR HIS COUNTS TO RISE AND PRAY FOR GUIDANCE FOR THE DOCTORS. THEY NEED TO DECIDE IF IT IS OKAY FOR CONNOR'S BONE MARROW TO GO THROUGH ANOTHER ROUND OF CHEMO. We should have the results of the bone marrow biopsy by Wednesday. I will update the website then. PLEASE CONTINUE TO PRAY THAT THE BONE MARROW IS STILL CLEAN.
Monday, January 15, 2007
Thanks for all your prayers. I've got some specific prayer requests this week. We went to the clinic today to start the chemotherapy, but his platelets only rose slightly and the other two blood counts have remained about the same. The doctors are concerned about this. There could be a few reasons why this is happening. The first possibility is that his bone marrow is just slow because of the transplants, and this chemo also seems to have a delayed reaction to Connor's counts. Usually, blood counts decrease around 7-10 days following chemo. With this chemo, Connor's counts seem to start falling around day 14 post chemo, and continue to fall for a couple weeks. After the last round, we had to wait six weeks before we could start Round #3. Explanation #2 is that the chemotherapy is really hurting his bone marrow, so that it cannot rebound very well anymore. Bone marrow can only take so much chemotherapy. Eventually, the bone marrow will not work anymore. The third explanation is that the cancer is back in the bone marrow. The doctors want to do a bone marrow biopsy on Connor Thursday to rule out that possibility.
PLEASE PRAY THAT THE CANCER IS NOT BACK IN THE BONE MARROW. PLEASE PRAY THAT CONNOR'S BONE MARROW IS JUST SLUGGISH DUE TO THE PREVIOUS BONE MARROW TRANSPLANTS. PRAY THAT NEXT WEEK WE WILL SEE A BIG IMPROVEMENT IN HIS COUNTS, ESPECIALLY HIS PLATELETS. I'm praying that Connor just needs a little more time to recover, just like after the previous round of this chemo. ALSO, PLEASE PRAY FOR WISDOM FOR THE DOCTORS. THEY NEED TO DECIDE WHETHER OR NOT IT IS SAFE FOR CONNOR TO HAVE ANOTHER ROUND OF CHEMO. WE DO NOT WANT TO OBLITERATE HIS BONE MARROW. I PRAY THAT GOD WILL GUIDE THEIR DECISIONS FOR CONNOR'S NEXT STEP IN TREATMENT.
It's always scary when doctors are concerned about Connor's precarious situation. It's so easy to start thinking of all the negative possibilites. I just have to remind myself to focus on God's words, not the words of doubt that want to creep in.
"Remember your word to your servant, for you have given me hope. My comfort in my suffering is this; your promise preserves my life."
Psalm 119:49 & 50
I want to share some quotes from Dr. James Dobsons's book, "In the Arms of God."
"We are promised throughout scripture that we are never left to fight our battles alone. That is great news for all who are weary and burdened by the stresses of living." .....Dr. James Dodson
"'Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace by removed,' says the Lord, who has compassion on you." Isaiah 54:10
"Even when life does not make sense, God has not lost control of our lives. He wants us to trust Him. His presence is very near.".......Dr. James Dobson
"But the eyes of the Lord are on those who fear Him, on those whose hope is in His Unfailing Love." Psalm 33:18
Please pray for Alex Podeszwa's parents as they are trying to decide what treatmen they should try next. The neuroblastoma is back in his bone marrow, and there is still some cancer in his bones. Please pray for his healing (www.caringbridge.og/visit/alexanderpodeszwa). Please pray for Alaina as she will be having her surgery soon to remove some of the small tumors in her chest (www.caringbridge.org/visit/alaina).
Thanks again for your prayers. We know that God will hear our prayers. Speaking of prayers, I also wanted to mention that Connor and Logan met Starlene Stringer at their school last Thursday. Starlene Stringer is one of the DJ's at KLTY who read Logan's Christmas Wish. They were able to thank her in person for reading the wish on the air. Thanks again KLTY and Starlene Stringer!
In Christ,
Joy
Wednesday, January 10, 2007 10:05 PM CST
This will be a short update, not long-winded like it usually is. We went to the Clinic on Monday, but Connor did not start chemotherapy. His platelets went down again, so we will try again next week. PLEASE PRAY THAT HIS PLATELETS WILL RISE, SO HE CAN START THIS ROUND OF CHEMO SOON.
Our friend, Logan, received an e-mail from an astronaut in a space station. They are praying for Connor in Outer Space now. Connor thought that was so cool. Thank you Logan for your sweet gift to Connor. Connor and Logan were on the Channel 11 News yesterday. Stephanie Lucero did a story on Logan's Christmas Wish. It was really sweet.
Thanks for checking in on Connor and thanks for your prayers. We really appreciate it.
"For thus sayeth the Lord God. 'I will bind up the broken and strengthen the sick.'" 2 Thessalonians 3:16
"Restrain your voice from weeping and your eyes from tears, for your work will be rewarded, so there is hope for your future." Jeremiah 31: 16 & 17
Tuesday, January 2, 2007 2:50 PM CST
We went to the Clinic today to see if Connor was ready to start another round of chemotherapy and his platelets are not high enough yet. We'll go back next Monday to try again. It will be good for him to have another week to gain weight and recuperate a little bit. Hopefully, we can get started next week.
We had a wonderful Christmas and New Year's Day. We enjoyed our time with family. Our friend, Logan, brought Connor the map a few days ago. They received about 3000 e-mails of people praying for Connor. Every Continent was represented and there were about 60 countries represented. All 50 states were represented, also. Thank you every one who e-mailed Logan and is praying for Connor. Thanks also to Logan. We sure appreciate being a part of his Christmas Wish and thanks KLTY for granting his wish.
PLEASE CONTINUE TO PRAY FOR CONNOR'S HEALING IN THE NEW YEAR. WE ARE HOPING 2007 WILL BE A CANCER FREE YEAR FOR CONNOR. PRAY THAT THIS WILL BE HIS LAST ROUND OF CHEMO, THAT HE WILL NOT NEED ANY MORE. PRAY THAT THE CHEMO WILL KILL OFF ANY LAST CANCER CELL. PRAY THAT GOD WILL GUIDE OUR STEPS THIS YEAR AND THAT GOD WILL GUIDE OUR DOCTORS' TREATMENT PLANS FOR CONNOR. PRAY THAT WE WILL GLORIFY GOD THROUGHOUT THE REST OF THIS JOURNEY.
Also, thanks for praying for Alaina. The lung biopsy showed that the cancer has not spread, it looks like it was scar tissue from a previous infection. She should start her first transplant soon. Also, pray for Grayson. They will get his cat scan and MIBG scan back this week. Pray that there is a reduction in the amount of cancer in his bones. Pray the same for our friend, Alex Podeszwa. He will have his scans this week, too.
"Now may the Lord of peace hiimself give you peace at all times and in every way. The Lord be with all of you." 2 Thessalonians 3:16
"For thus sayeth the Lord God. "I will bind up the broken and strengthen the sick." Ezekiel 34:16
Joy Cruse
Wednesday, December 20, 2006 4:14 PM CST
Connor is starting to feel better now. Monday night, we spent the night in the hospital because Connor was dehydrated. It's amazing what a night of fluids will do for a kid. He was so lethargic all day Monday and I had to carry him everywhere (even into the hospital), but after an hour of fluids, he was already perking up. Although it was strange being on the 10th floor (oncology) again, it was great seeing a lot of my favorite nurses and volunteers, like Stacy, Jennie, Christin, Heidi, and Miss Linda in the Playroom. Merry Christmas to you all!
Connor was feeling so much better that he went to school today to celebrate Jesus' birthday with his friends. I think connor will be "eating like a hog" again, just in time for Christmas. We are looking forward to spending some quality time with our families (and no trips to the hospital, no chemo, no vomiting, no diahrrea, and NO MORE CANCER). Thanks for all your prayers.
I wanted to share with you a story about one of Connor's classmates. His name is Logan and he is on the website slideshow right now. He and Connor have Indian Head-dresses on. In Dallas, there is a Christian Radio Station (KLTY) and they read Christmas Wishes on the Radio. They are wishes for financial help, toys, health concerns, etc. People in the Dallas area will help grant those wishes. Well, Logan wrote to KLTY to see if they would grant his Christmas Wish....
"I'm writing to you on behalf of my 5 year old son, Logan. Logan is in Kindergarden at Prestonwood Christian Academy and has asked me to send an e-mail to you with a very special wish for Logan's friend and classmate, Connor Cruse, who has cancer...(history of Connor)...Logan has prayed for his friend's healing every night for over a year. When writing to Santa this year, Logan's request was that Santa talk to Jesus to help take Connor's cancer away. Logan listens to your show every morning and has heard that people all over the world listen over the Internet. Logan 's Christmas Wish request is that you would tell everyone about Connor and ask the whole world to pray that God will take Connor's cancer away. While only 5 yeas old, Logan's faith in God and his belief in the power of prayer is truly overwhelming. Logan believes that a miracle like this would be the best Christmas Present the whole Lower School at PCA could ever get."
This morning, Logan was on the radio while they were reading his Christmas Wish. His parents have set up an e-mail address for everyone praying for Connor to e-mail him. He is keeping track of all the prayers on a map. He will give the map to Connor as a Christmas present. He has already collected prayers from all 7 Continents (and over 1000 e-mails) . Everyone listening to the Christmas Wish this morning was asked to pray for Connor and e-mail Logan so that he could keep track. I wanted Connor's website Prayer Warriors to be aware of this, so they could add their locations to Logan's map. Please feel free to e-mail Logan at littlelion2019@yahoo.com. Logan's mom said that this was the only item on his Christmas list. Now that is the true meaning of Christmas... Unselfish Love.
During this time of hustle and bustle, we wish you a holiday of stillness and peace. Chuck Swindoll said "Noise and words and frenzied, hectic schedules dull our senses, closing our ears to his still, small voice and making us numb to His touch." I pray that you will make time to be still and feel His touch this Christmas.
"I'm finding myself at a loss for words
And the funny thing is, it's okay
The last thing I need it to be heard
But to hear what you would say.
I'm finding myself in the midst of You
Beyond the music, beyond the noise
All that I need is to be with You
And in the quiet hear Your Voice.
Word of God Speak
Would you pour down like rain
Washing my eyes to see
Your Majesty
To be still and know
That You're in this place
Please let me stay and rest
In your Holiness
Word of God Speak." ....Words from Mercy Me
"Be still and know that I am God." Psalm 46:10
Merry Christmas from the Cruse Family!
Sunday, December 17, 2006 10:28 AM CST
Connor is having a hard time with this round of chemo. He's throwing up a lot. He's not eating very much and he has bad diahrrea. I'm worried about him. He's lost a few pounds already and I'm worried that he will get dehydrated. He's been pretty lethargic today. I wanted to add a quick update so that I could ask you to pray for Connor's specific needs. PLEASE PRAY THAT HE WOULD STOP VOMITING AND HAVING DIAHRREA. ALSO, PRAY THAT HE WOULD START EATING BETTER. I'm praying that he will be finished with this chemo after the next round. It is so hard for us to see him like this. Thanks so much for your prayers.
Thursday, December 14
Connor's plateles rose considerably and he started his chemotherapy on Monday. He's tolerating it quite well so far. On his first day of chemo, he went to karate class 2 hours after he finished the chemo. He threw up last night for the first time since we started this round. He's got 2 more days of this round and then he'll get a break for 2 weeks. If his counts recover well, he'll start his second round on New Year's Day. What a great way to start the New Year - with a bang!!! He'll have his scans repeated around the end of January and then we'll find out what the plan is. He'll either have to repeat more chemotherapy or he'll have the surgery to remove the small tumors in his chest. The surgery will come before he can start the Antibody therapy in New York. PLEASE PRAY THAT GOD WILL DIRECT THE DOCTOR'S PLANS FOR CONNOR'S FUTURE TREATMENT. PRAY THAT CONNOR WOULD ENDURE THIS ROUND OF CHEMO WELL AND THAT IT WOULD KILL ANY LINGERING CANCER CELLS.
It's amazing to me how children are so great at focusing on the here and now...TODAY. When I was preparing Connor for this round of chemo, I was telling him how he would get more "yucky medicine" that would make him throw up and have diahrrea for awhile. I told him that the nurse would have to access his port (stick a needle through his skin around his chest area). I told him that we would put numbing cream on it first, so the needle wouldn't hurt as bad. Connor immediately said, "Yes!!! Numbing cream is the most magical thing in the hospital. I love it!" He didn't seem to mind what the next 2 weeks held for him, he was just so excited that he was going to get numbing cream and it wouldn't hurt to access his port. I wish I would remember to look at the positive things right in front of me, instead of worrying about the days to come. We can learn so much from our children.
We are so grateful to God that the cancer in Connor's bones is "resolved" now. If this chemo had not worked, we would be facing a future of experimental drugs and treatments that may or may not have worked. We feel like God's given Connor a second chance to beat this cancer.
"Do you believe in second chances
Or in a love that never fades
Put your faith in what you can't see
Just put your hand in Mine
And I'll show you the way
Never mind your worries
Never mind your fears
They can only take you far from me
When you feel there's nowhere
Left for you to turn
Well, I've got all you want
And everything you need
Come on back to me
Come on back to me"
I love those words by Third Day from there song "Come On Back To Me."
"Be strong and take heart, all you who hope in the Lord." Psalm 31:24
"I have loved you with an everlasting love; I have drawn you with loving-kindness. I will build you up again." Jeremiah 31:13
Please continue to pray for our friend, Alaina (www.caringbridge.org/visit/alaina). They hope to find out the results of her bone marrow biopsy today. If it is clean, she will start her bone marrow transplant next week. I saw Alaina at the clinic yesterday and she was dressed in an angel costume (which is so appropriate for her, because she is such a sweet child) dancing around the clinic. I think she is the most beautiful, bald angel I have ever seen. Pray for Alex (www.caringbridge.org/visit/alexanderpodeszwa) as he finishes his second round of the COG antibody treatment. Pray for Grayson (www.caringbridge.org/visit/graysonbradshaw) as he finishes his second round of chemo. Pray that God would heal all of these precious children from this ugly cancer, neuroblastoma.
Thanks again for your prayers.
Joy Cruse
Thursday, December 7, 2006 4:05 PM CST
Connor's chemotherapy was postponed until next week. Before every round of chemo, they have to check Connor's blood counts. His platelets were too low to begin chemo. We will go back next Monday and try again. PLEASE PRAY THAT HIS PLATELET COUNT HAS RISEN AND WE CAN BEGIN THIS NEW ROUND OF CHEMO. ALSO, PLEASE PRAY THAT THIS CHEMO KILLS ANY LURKING CANCER CELLS.
Tait and I really wanted to thank all of you for your faithful prayers. We know that we could not have gotten this far with our family and faith intact without your prayers. We know that your prayers have guided us through this journey. We have felt God's strength, comfort and peace all along. We know that your prayers for us have been heard. We also believe that your prayers for Connor and his healing are being answered.
There have been so many examples of answered prayers along the way. For example, the clean bone scan last week, the success of the surgery in Boston, the rising of his platelets a month ago, breaking his fever and healing the infection during the second transplant, and getting enough stem cells for the 2 transplants when it did not seem possible. All of these things were not expected to happen. Yet, they did. God answered our prayers and we know that there are so many instances where God has intervened for Connor and we don't even know it. We feel so humbled and blessed by the out-pouring of love and prayers for our son and our family. We wanted you all to know how grateful we are.
There is this song on Connor's healing scriptures CD about prayer. I don't know who wrote it or sings it, but the words say exactly what I feel....
Somebody's praying
I can feel it
Somebody's praying for me
Mighty hands are guiding me
To protect me from
What I can't see
Lord, I believe
Somebody's praying for me
I've been through the darkest caverns
where no light has ever seen
Still I went on
Because there was someone
Down on their knees
Lord, I thank you for those people
Praying all those times for me
Thank you all so much for your fervent prayers for us.
"For I know that through your prayers and the help given by the
Spirit of Jesus Christ, what has happened to me will turn out for my deliverance." Phillipians 1:19
I also wanted to mention that Connor got baptized last Sunday. It was really nice. Our pastor, Jack Graham, baptized Connor. So many people in our church have been praying for Connor, and it was so special for him to be baptized in front of our friends who have been encouraging us all these long months. My family from Oklahoma and Frisco was there and so was Tait's family. It was a special day.
Please pray for our friend, Alaina. She will have a bone marrow biopsy soon to see if the cancer is gone from her bone marrow. Also, please pray for our new friend, Grayson Bradshaw (www.caringbridge.org/visit/graysonbradshaw). He's a 2 1/2 year old from The Colony who was just diagnosed with neuroblastoma. Thanks again for praying for these sweet, precious children.
Joy Cruse
Wednesday, November 29, 2006 10:17 PM CST
Hallelujah!!!!!!!! The final report confirmed the first, preliminary report! This is truly a miracle. In most cases, when a child with neuroblastoma goes through the double transplant and still has some "refractory" disease, the child's cancer has become resistant to the chemotherapy. Because of Connor's status, some doctors warned me that it would not be surprising if Connor did not respond at all to the chemotherapy. The best case scenario that I was told is that he may improve, but not a lot. That's why we were praying for the scans to show the disease in the bones to be clear. Now, there is no doubt (to us, anyway) that God took control and cleaned up his bones from the cancer. Connor responded to the chemo way beyond anyone's expectations (except our's). Praise God for his healing power! We are ecstatic here in the Cruse household! These words from Chris Tomlin sum up our feelings.....
"From the highest of heights to the depths of the sea
Creations revealing Your majesty
From the colors of fall to the fragrance of spring
Every creature unique in the song that it sings
All exclaiming
Indescribable, uncontainable
You placed the stars in the sky and You know them by name
You are amazing God
All powerful, untameable
Awestruck we fall to our knees as we humbly proclaim
You are AMAZING GOD!"
"He heals the broken-hearted and binds up their wounds. He determines the number of the stars and call them each by name. Great is our Lord and mighty in power; his understanding has no limit." Psalm 147:3-6
PLEASE CONTINUE TO PRAY FOR GUIDANCE FOR CONNOR'S NEXT STEP IN TREATMENT. Because Connor responded so well to the chemotherapy, the doctor in New York wants Connor to repeat the last two rounds of chemo before we head to NY to start his Antibody treatment there. We prayed so hard that the chemo would kill the cancer in his bones, so that he would not need any more chemo. I guess that back-fired. I think they want him to do more chemo for extra insurance against relapse in the future. We need to make sure we have killed any last cell of cancer that may be lurking. I guess because he responded so well to the chemo, it must be doing an excellent job of killing any of those left over cells. We really did not want to put Connor through any more chemo. But, if it will reduce the chances of relapse in the future, it may be worth enduring 2 more rounds. We just need some more specific information from New York. We do not want this to be an open-ended treatment. We hope that the doctor in NY will be satisfied after these 2 rounds of chemo are over. There needs to be some closure with this chemotherapy. We are ready to put chemotherapy behind us once and for all.
PRAY THAT WE GETS SOME CLARIFICATION FROM NY AND THAT THESE 2 ROUNDS WILL BE THE END OF IT. IF HE DOES REPEAT THE CHEMO (probably next week), PRAY THAT IT WILL KILL ANY LURKING CANCER CELLS. Thank you so much for your prayers. We KNOW that your prayers have been heard by God, and He has been moved to act in favor of Connor because of your prayers on his behalf. We are so grateful for every one of you.
Thanks to the Nuclear Medicine Department at Children's (Jaqueline, Al and Jules). We appreciate you so much. You are so kind to Connor. You really make a stressful occasion so much more bearable. Also, thanks to James DeMasi at Children's. He has been the one that has been copying Connor's scans, reports and clinical histories and sending them to New York and Boston. All of your extra effort on Connor's behalf is truly appreciated. As a mom, I am so grateful for all your support. Even when the current situation looks bleak, you always offer words of encouragement. You are honest and blunt, yet you always offer me some hope. It really helps me to stay positive for Connor, so that I can help him fight this disease. Thanks, Brad, in the clinic, too. You help us get thru the out-patient rounds of chemo. We are grateful that you take such great care of Connor. Look's like we'll see you again soon.
"I shall not die, but live, and declare the works of the Lord." Psalm 118:17
In Christ,
Joy
Monday, November 27, 2006 5:52 PM CST
We received the PRELIMINARY REPORT from the MIBG scan today. It was very good news. The report said that the disease in the bones was greatly reduced or resolved. PRAISE GOD! I asked what "resolved" meant. To me, it means that the disease is gone; taken care of; not seen on the scan. He said he would agree with that. He would like to see what the final report says before he gives any definite answers. We should see the final report in a couple days. PLEASE PRAY THAT THE FINAL REPORT AGREES WITH THIS INITIAL REPORT ... THAT THE CANCER IN THE BONES IS RESOLVED. The tumors seem to be the same size in this scan as they were in the previous scan, and the report said there seemed to be less uptake of the dye. So that is another good sign that things are dying or progressing in the right direction. Connor will most likely do a urine test to check for the markers in his urine. If those levels have decreased, that will be another good sign that the cancer is dying. Dr. Kushner (in New York) will hopefully look at the scans on Wednesday, so we will have his opinion soon, also. PRAY THAT THEIR INTERPRETATION OF THE SCAN IS THE SAME AS THIS INITIAL REPORT HERE IN DALLAS. If that is the case, we will be discussing with Dr. Kushner our next steps in Connor's treatment. I have to say that I am cautiously optimistic/excited. I'll let you know when we get the final, official report! Thank you so much for your fervent prayers. We are forever grateful!
JOY
Wednesday, November 22, 2006
We have the results from the cat scan, but we're still waiting on the MIBG scan. The cat scan shows that the tumors are still the same. There is no new growth, which is great. I know the doctors were hoping that they would shrink more, but they have not shrunk for 16 months. I believe they are just DEAD, that's why they are not shrinking any more. The MIBG scan is the one we are most interested in. That is the scan that will show us what the disease in his bones is doing. Children's Medical Center-Dallas has a copy of the scan and so does Dr. Kushner in New York. We were hoping Dr. Kushner could take a look at it before Thanksgiving, but he's out of town this week. Hopefully, we will have the results by next Tuesday, when he's expected back in the office. Thanks for your fervent prayers. PLEASE KEEP PRAYING THAT THE DISEASE IN HIS BONES IS DEAD!
We spent a few days in the Bahamas with the children and Aunt Christie and Uncle Tom. We had a great time. Tait planned the vacation last January while Connor was in the hospital for his second transplant. Tait wanted to plan a great vacation that Connor (and the whole family) could look forward to. It was so great seeing the children running in and out of the ocean, enjoying life. It was such a stark contrast to Connor's condition this time last year - his first transplant. We are so thankful this year to be spending Thanksgiving with our family in Oklahoma, instead of spending the holiday in the hospital. We have much to be thankful for.
I have to say that my perspective on Thanksgiving will forever be changed. Before, I was always thankful during the good times when it was easy to be thankful. Now I've found I can even be thankful during the hard times. When I look hard enough, I can see blessings surrounding me even during the most difficult times. God has placed little blessings along the way to encourage me and bring me closer to Him. I've often said that Tait and I have a front row seat to watch and see what God is going to do through all of this. We will see his Glory first hand, if we will just keep our eyes open.
That is the one request that Moses asked of God in Exodus 33:13-19 (paraphrased). He wanted to see God's Glory. Moses asked Him,
"'You can call me by name and tell me I have found favor with you. Please if this is really so, show me your intentions so I will understand you more fully and do exactly what you want me to do.'
And the Lord replied, 'I will personally go with you, Moses. I will give you rest -everything will be fine for you.'
Then Moses said, 'If you don't go with us personally, don't let us move a step from this place.' Then Moses had one more request, 'Please let me see your glorious presence.'
The Lord replied, 'I will make all my goodness pass before you, I will call out my name to you. I will show kindness and mercy to you.' I will show you My glory."
I want the same thing that Moses did. I want to see His Glory. Like Moses said, if God is with me, I can move forward, I will know more fully what I am to do and I will have rest. As I see his Glory (blessings) as we travel through this long journey, it will help me carry on.
It's like the words from Third Day's song, "Show Me Your Glory"
I caught a glimpse of Your splendor
In the corner of my eye
The most beautiful thing I've every seen
and it was like a flash of lightning
Reflected off the sky
and I know I'll never be the same
Show me Your glory
Send down Your presence
I want to see Your face
Show me Your glory
Majesy shines about You
I can't go on without You, Lord
When I climb down the mountain
and get back to my life
I won't settle for ordinary things
I'm gonna follow You forever
And for all of my days
I won't rest 'til I see You again
Show me Your glory
Show me Your glory
I can't live without You
Happy Thanksgiving to you all! I pray that you will see His glory during this Holiday season.
Joy Cruse
Monday, November 13, 2006 4:42 PM CST
Connor had a great week last week. He's still "eating like a hog" and he's definitely full of energy. His team had their last soccer game on Saturday and they had a pizza party after the game. His blood counts also look good. They are creeping up again slowly.
We finished his cat scan this afternoon and he is still due to have his MIBG scan on Friday. PLEASE CONTINUE TO PRAY FOR THE CANCER TO BE GONE IN HIS BONES. PLEASE PRAY WE CAN MOVE ON TO THE NEXT ROUND OF TREATMENTS (ANTIBODY THERAPY) I would love to be able to continue on to the next part of his therapy. I just hate what the chemo does to his body and I'm so ready to move forward. I would love to see some great progress. I am so thankful for everyone praying for great test results from this scan. I believe that God will hear our prayers.
When Connor was first diagnosed, the doctors estimated that 18 months would be the length of his treatment. It will be 18 months on Wednesday and we are not near the end. If we can move on to the antibody therapy, we will (hopefully) be closing in on his final treatment plan (with another resection surgery in there somewhere). After the surgery in Boston, I was so ready to be at the end of these treatments, but my timing is not HIS timing. I am trying to "hold fast" to finish this marathon. PLEASE PRAY THAT TAIT AND I WILL HAVE THE STRENGTH TO CONTINUE AND THE ABILITY TO REMEMBER HIS FAITHFULNESS.
These words from "Mercy Me" remind me daily that I need to "Hold Fast."
"To everyone who's hurting
To those who've had enough
To all the undeserving
That should cover all of us
Please do not let go
I promise there is hope
Hold fast
Help is on the way
Hold fast
He's come to save the day
What I've learned in my life
One thing greater than my strife
Is His grasp
So hold fast
Will this season ever pass?
Can we stop this ride?
Will we see the sun at last?
Or could this be our lot in life?
Please do not let go
I promise you there's hope
Hold fast
Help is on the way
Hold fast
He's come to save the day
What I've learned in my life
One thing greater than my strife
Is Your grasp
So hold fast."
I'm trying to focus on the words from my devotional from Francis J. Roberts...
"Be not weary in well doing. It is your Father's good pleasure to give you the kingdom (Luke 12:32). do not be disheartened if it seems to be delayed in coming. Lo, He is not slack concerning His promises, as some men count slackness. HIS TIMES ARE NOT OUR TIMES, and His patience endures forever. He can wait and not be anxious. While you see delay, He sees His well being performed in ways not discernable to your eye. What you see as standing still, He sees unfolding. It is like the rose that opens, but the motion is imperceptible to the human eye.
Rest in Him. He is surely bringing to pass His perfect will in and through the entire situation, and it is doing a unique work in many different lives, as they are touched and affected by the action.
Be still and wait. You shall know that the Lord your God, it is He who fights for you, and HE WILL DO A MIRACLE before your eyes if you will but trust Him completely and cease to be anxious. What others are doing is as nothing compared to what His is doing and is GOING to do.
REJOICE! Let this be a day of gladness and of jubilation, for our God is mighty, and His hand is working a victory!"
I realize that I'm quoting a lot of words, but I'm sure that there are many of you that are just like us - waiting on the Lord. I just want to encourage you to not grow weary, but HOLD FAST!
Please continue to pray for our friends. Everyone's scans went well. Alaina and Alex are starting their treatments this week. Pray that they go well and they kill the cancer in Alex's bones and Alaina's bone marrow. Pray that Bronson continues to have CLEAN SCANS! Yeah for Bronson's first clean scan last week! PRAISE GOD!
In Christ,
Joy
Sunday, November 5, 2006 9:19 PM CST
We got good news Thursday afternoon about Connor's platelets. They rose from 5,000 to 35,000 in two days. He did not need platelets. Yeah!!!! I enjoyed Friday so much because we did not have to spend it at the clinic. I've never had such a good time cleaning my house. It's amazing how your perspective changes. Even cleaning my house sounded fun compared to an afternoon at the clinic. It was just nice not to have my day filled with anything "medical." It's amazing how much time is spent dealing with this disease. Anyway, we all had a great Friday and we saw the new movie "Flushed Away" that evening. Thank you for your prayers. Your prayers were so fervent that all of Connors counts (red and white blood cells) went up.
Connor is also starting to feel better. His appetite is always the best indicator of how he is feeling and he's eating better now. As Connor puts it, "I'm eating like a HOG!" He's also stopped vomiting and his diahrrea is a lot better. He lost about 3 pounds in 2 weeks. He lost a little weight from the stomach virus first and then the chemo finished it off. Tait told him he would pay him $10 for every pound he could gain. If that's not incentive, I don't know what is. Thanks for your prayers in this matter. It is so good to see him feeling better. It is like medicine for my soul!!!!
Connor's MIBG scan is set for November 17. They have to wait at least a couple weeks after the chemo finishes to allow it more time to work. PLEASE CONTINUE TO PRAY FOR A CLEAN SCAN! I know that we are "shooting for the moon" in our prayers, but I know that nothing is too hard for God!
"With men it is impossible, but not with God; for with God all things are possible." Mark 10:27
Wednesday, November 1, 2006
Connor finished his chemo last Friday, but he is still not feeling well. He's still throwing up and having diahrrea. I have to admit that this week has been pretty hard. I just feel like I can only take so much of watching Connor barely eat anything, and when he does eat, it all comes back up or it runs through him pretty quickly. He's lost a couple pounds and he doesn't have any extra pounds to lose. He's still pretty lethargic compared his normal self. I guess seeing him feel this crummy AGAIN is getting to me. PLEASE PRAY THAT HE WILL START FEELING BETTER AND EATING BETTER. PRAY THAT HE WILL GAIN HIS WEIGHT AND ENERGY BACK. PRAY THAT THIS WILL BE THE LAST CHEMO THAT HE WILL EVER NEED. THAT IS MY FERVENT PRAYER THAT THESE TWO ROUNDS OF CHEMO WILL KILL THE CANCER IN HIS BONES AND ANY OTHER ACTIVE CANCER CELLS.
We got his bloodwork back today and it looks like his platelets are very low, which is strange because the lab tech could barely get him to bleed enough to fill her little vile. That is a sure sign that his platelet count is good. And his finger stopped bleeding immediately. Anyway, we are doing his bloodwork again tomorrow to make sure his platelet count is good. If they are low, it is off to the clinic to get platelets. PLEASE PRAY THAT HIS COUNTS ARE GOOD TOMORROW!!
His scans are scheduled for the week of November 13-17. He will have his MIBG scan on that Friday. Of course, with Thanksgiving being the following week, I'm not sure when we'll get any results from the scans. PLEASE PRAY THAT THE SCANS LOOK GREAT! PRAY THAT THE CANCER IN THE BONES IS GONE OR GREATLY DIMINISHED. PRAY THAT TAIT AND I WILL HAVE THE PATIENCE TO WAIT ON THE RESULTS OF THE SCANS. PLEASE PRAY THAT GOD WILL KEEP OUR FAITH STRONG.
"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." 2 Corinthians 4:16-18
In Christ,
Joy
Tuesday, October 24, 2006 4:16 PM CDT
Tait and I have been out of town, so I didn't get a chance to update the website until today. Connor is doing well. He started Round 2 of his chemotherapy. He's doing well so far. God took great care of Connor with the last round (all of his blood counts went up last week) and I pray this round will be the same. PLEASE PRAY THAT GOD WILL PROTECT CONNOR'S COUNTS THIS ROUND OF CHEMO AND PRAY THAT THIS SECOND ROUND WILL FINISH OFF THE CANCER IN HIS BONES. I know the doctor in New York and the doctor in Dallas do not feel like these two rounds will be enough, but we are praying that IT WILL BE ENOUGH. I pray that this will just be a slight delay in Connor's overall healing.
I wanted to thank my mom for taking care of the kids while we were gone. All four of them got the stomach virus and she was worn out by the time we got home. Even Tait amd Lexie got the virus over the weekend. Ugghhh!! I also wanted to ask you to PRAY THAT CARSON DOES NOT GET THE CHICKEN POX AND GIVE IT TO CONNOR. There have been three kids in his class that have had the chicken pox. It would not be good if Connor got the illness. Thanks again for your prayers. PLEASE KEEP PRAYING FOR CONNOR'S HEALING.
I also wanted to ask you to pray for Alaina (www.caringbridge.org/visit/alaina). They found out last week that the cancer was in her bone marrow. It either came back or it was a mistake when they first said it had cleared. They thought her bone marrow had cleared after the second round of chemo. It's possible that the biopsy was not an accurate sample. Either way, she is now getting the same chemo that Connor is getting. She was ready to start her transplant this week, but now this has caused a delay. Thanks for praying for her.
I'll end with this quote from Chuck Swindoll in his book "Intimacy with the Almighty." "I want to affirm the importance of relinquishing everything to Him because He is fully trustworhy. I'm finally learning that His sovereign plan is the best plan. That whatever I entrust to Him, He can take care of better than I. That nothing under His control can ever be out of control. That everything I need, He knows about in every detail. That He is able to supply, to guide, to start, to stop, to sustain, to change, and to correct in His time and for His purposes. When I keep my hands out of things, His will is accomplished, His Name is exalted, and His glory is magnified."
"And call upon me in the day of trouble: I will deliver thee, and thou shalt glorify me." Psalm 50:15
In Christ,
Joy
Sunday, October 15, 2006 4:35 PM CDT
We've had a nice, peaceful week. Connor enjoyed his week of normalcy ... no chemo. We went to check his bloodwork on Monday and his labs looked great. None of his red blood cells, white blood cells or platelets changed much at all. It could be that this chemo does not affect his counts as much as the other chemo drugs or it could be that his counts dropped later in the week. We're checking his blood counts again on Monday. Please pray that his counts don't drop considerably.
He continued to have nausea and diahrrea until Thursday, but he's much better now. He had his birthday party with his friends on Friday at Pump It Up and then we went to the Homecoming Football game. Connor and Mollie-Claire shared their birthday party again this year. They took toy donations for the children at Children's Medical Center instead of receiving presents. I think they enjoy being able to give to other children who are sick. The boys played in a soccer game Saturday and then we enjoyed dinner out to celebrate Connor's birthday and Mason's upcoming birthday. Yes, it's hard to believe. Mason is turning one on Tuesday!!!!! He's such a cheerful and sweet natured little boy. We are so lucky to have him in our family.
There's not much new to report this week. PLEASE KEEP PRAYING THAT THE CHEMO WILL TAKE CARE OF THE CANCER IN CONNOR'S BONES. PRAY THAT HE WILL BE ABLE TO TOLERATE THE NEXT ROUND OF CHEMO STARTING ON THE 23RD. PLEASE CONTINUE TO PRAY FOR GUIDANCE FOR ME AND TAIT.
In closing, I'm going to share a song that Carson (my 4 year old) picked out. This is one of his favorite songs. It is "Through It All" by Selah.
I've had many tears and sorrows,
I've had questions for tomorrow,
There've been times I didn't know right from wrong:
But in every situation God gave blessed consolation
That my trials only come to make me story.
I thank God for the mountains,
And I thank Him for the valleys,
I thank Him for the storms
He brought me through;
For if I'd never had a problem
I wouldn't know that He could solve them,
I'd never know what faith in God could do.
Through it all, through it all,
I've learned to trust in Jesus,
I've learned to trust in God;
Through it all, through it all,
I've learned to depend upon His Word.
"We consider blessed those who have persevered. You have heard of Job's perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy." James 5:11
"Be merciful to me, Lord, for I am faint; O Lord, heal me, for my bones are in agony." Psalm 6:2
Thanks,
Joy Cruse
Saturday, October 7, 2006 4:25 PM CDT
Good news! The bone marrow is still clean. We found out yesterday. Also, it looks like there is no new disease in the bone. It looks like this is the same disease he's had from the beginning, it's just more "dead" now than when he first started the chemo. The doctors in Dallas have not compared the MIBG scans yet, but they have read the written report on the scan done in NY and the report details the bone disease in the same locations as the MIBG scan done in Dallas last month. We are praising God for this good news. Neuroblastoma is an aggressive cancer and it does not usually lie dormant for 8 months, like Connor's has. I know that it is God holding back the cancer.
Hopefully, the chemo will work wonders on the disease in his bones. It doesn't have nearly as much to work on as it did before Connor went to transplant. I'm hoping that since the tumors are mostly or all dead, and the marrow is clean, all the chemo can be directed to killing the cancer in his bones.
I know that when Connor was diagnosed, his disease was extensive. We're hoping that this is just a case of needing a little more chemo to finish up the job, so that the cancer will all be dead now. The oncology doctors in Boston and New York told me that most neuroblastoma patients have their tumors removed before their transplants, so that the chemo during the transplants has the best chance of working on a smaller amount of cancer instead of all those tumors. Maybe that is why Connor still has some residual disease, because the chemo sure had a lot of cancer to work on when Connor went into his 2 transplants.
Tait and I are just looking at this as a time delay. God's timing is perfect and I guess it wasn't the right time to go to New York yet. I know that not all children respond to chemo at this point in their treatment, but we are believing that he will continue to respond to the chemo. God will take care of him. PLEASE PRAY THAT THESE TWO ROUNDS OF CHEMO WILL KILL THE RESIDUAL DISEASE IN HIS BONES AND ANYWHERE ELSE THAT THERE IS RESIDUAL CANCER. I hope that the doctors will be amazed at how well he's responded to the chemo.
Connor had his first round of chemo last week and it was out patient, so it was much easier than his previous rounds of chemo. He had some side effects like nausea, vomiting and tiredness, but overall it wasn't bad. This combo of chemo drugs may not lower his blood counts like the previous chemo drugs that Connor has had. PLEASE PRAY THAT HIS COUNTS WILL NOT SUFFER TOO MUCH. I know this could be really hard on his new bone marrow. Connor will have a two week break and then he'll repeat this round of chemo again on the 23rd if his counts are okay to start then. After a two week break, we'll then repeat the scans.
Thanks for all your prayers. We really appreciate Connor's faithful prayer warriors.
Through all this, Tait and I constantly feel God's presence. When our outlook seems the darkest, God gives us the strength and peace to carry on. He has carried us this far and he will continue to bring us through this long journey.
"I thought that I was all alone,
broken and afraid
but you were there with me,
you were there with me.
And I didn't even know I had lost my way,
but you were there with me,
yes, you were there with me.
'Til you opened up my eyes I never knew,
that I counldn't ever make it without you.
Even though the journey's long,
and I know the road is hard,
well the one who's gone before me,
He will help me carry on.
And after all that I've been through,
now I realize the truth
that I must go through the valley
to stand upon the Mountain of God."
These are words from Third Days song, "Mountain of God." It reminds me that God is always here with me.
"The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged." Deuteronomy 31:8
"Love never gives up, never loses faith, is always hopeful, and endures through every circumstance." I Corinthians 13:7
"Wait for the Lord; be strong and take heart and wait for the Lord." Psalm 27:14
"Have I not commanded you? Be strong and courageous! Do not tremble or be dismayed, for the Lord your God is with you wherever you go." Joshua 1:9
Please continue to pray for Alaina (recovering from surgery to resect her tumor), Bronson (receiveing 3F8 treatment in NY), Alex (returning home from Michigan after radiation) and Raoul (still needs to clean his bone marrow). Happy Birthday Alaina on Monday! Oh yeah, I forgot to mention that Connor turned six on Oct 2. We are celebrating another year with Connor and we're celebrating life!!!!!!!!!!!!!!
In Christ,
Joy Cruse
Friday, September 29, 2006 8:49 PM CDT
What a difference a day can make. This morning we got new information about Connor's MIBG scan. The MIBG machine is new to Children's Med. Center and they have to send the scan to a specialist in Nuclear Medicine to read it. It appears as if the radiologis here may have read the scan wrong.
When a patient does the MIBG scan, they are injected with a radioactive dye. The dye will absorb in abnormal tissue. This dye absorbs into the patient's tumors, whether it is alive or dead. If it is alive, the tumor will absorb a lot, and if it is dead, there will be little absorption. That is where Connor's scan is. There is little absorption of the dye in his tumors. There is also a little absorption of dye in his bones. After transplant, the absorption of the dye was a lot less in his bones than before. The radiologist interpreted this dye in his bones the same way that he interpreted the tumors, meaning he felt that the cancer looked like it was dead in his bones due to little uptake of the dye.
When Dr. Kushner saw Connor's MIBG scan today, he said that you read soft tissue and hard tissue differently on the MIBG scan. We were reading the soft tissue correctly (the tumors), but we were reading the hard tissue incorrectly. If the scan is still lighting up on the bones, the cancer is still alive. At first, when Dr. Kushner gave us the news that there was evidence of disease in Connor's bones, we thought it was new disease. But in fact, this is disease that has always been present. At first, we thought this was a relapse, but they call Connor's cancer "refractory," meaning that the chemo did not kill it all or in some cases that the child has become resistant to the chemo. We do not know yet if this is old disease plus some new disease or if this is still just the old disease. Dr. Kushner is sending the MIBG scan to Dallas for us to compare this scan to the one done a month ago, which showed nothing new. PLEASE, PLEASE PLEASE PRAY THAT THERE IS NO NEW CANCER, THAT THIS IS JUST THE OLD CANCER THAT HAS NOT DIED YET.
Our next step is that Connor will get more chemo. After two rounds, we will do a MIBG scan again to see if there is any improvement. Our goal is to get the disease in the bone to a more managable level and then we can start the antibody study in New York. Dr. Kushner will continue to look at Connor's scans to let us know when Connor is ready for his antibody. If the chemo does not get his bone disease under control, we will then possibly do the COG antibody study here in Dallas. It works very well on cancer in the bones. Hopefully, with the help of that treatment, Connor will be ready for the treatment in New York. PLEASE PRAY THAT GOD WILL HEAL CONNOR'S BONE DISEASE. PLEASE PRAY FOR GUIDANCE FOR TAIT AND ME AS WE ARE TRYING TO DECIDE THE NEXT STEPS FOR CONNOR. ALSO, PRAY THAT HIS BONE MARROW BIOPSY RESULTS WILL COME BACK CLEAN NEXT WEEK. PLEASE PRAY THAT OUR INSURANCE WILL HELP US PAY FOR THESE TREATMENTS - OUR APPEAL IS STILL PENDING. Thank you so much for your faithful prayers.
We were taken back by this news at first, but now we are back on track. We will stand in faith that God is in control and we are in his loving hands.
Tait wants to share a story with you that sums up where we stand. On September 2 (Joy's birthday), Tait was in Tanzania on his 40th birthday hunt. While hunting Cape Buffalo with my Dad, they became separated about forty yards apart with the herd of buffalo right in front of them in tall grass. The buffalo winded my Dad and began to charge as a herd straight toward Tait and the two trackers with him.
"As we stood in front of three small 1-2 inch trees waiting on the other hunting party we heard the herd break and felt the earth moving. The tall grass in front of me broke loose as the herd of 45 charged right toward me.
With the herd of animals running at us at 20plus mph and thirty feet wide-we had nowhere to run. I tried to run to the left, but the tracker grabbed me and held me single file behind the other tracker as we tried to hide behind the small trees. The herd, already easily breaking down 6-7 inch trees in their way, were right on us.
When the black cloud was five to ten yards away, they miraculously moved to the left and to my right. They flew right by me. Sometimes they were as close as three feet from me. I can remember the smell of their breath, the heat of their black coats as they went by, and the earth shaking for almost ten seconds. The look in their eyes was scary and reminded me of the African saying "Buffalo look at you like you owe them money" and "Anything in Africa less than 10 yards away is Death". My tracker behind me was moving me to the left as the big bulls went by to make room for their wide horns-some were brushing my sleeve. As the 150,000 plus pounds of animals went by, they made a road and knocked everything down in their path like tank patrol. I knew when they were on me, at 5 yds away, that my life was over. I knew and felt it. This close call was the closest call that the trackers and the Professional Hunter had ever heard of or ever seen. As the fear enveloped me, I suddenly had a sense of calm. It was as if I heard God say to me, "do not fear, I have you in my hand, just like I have Connor in my hand." The herd eventually all ran past us, and I was left with the unshakable confiramtion that God is in control and I need not fear.
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." Isaiah 41:10
In Christ,
JOY
Wednesday, September 27, 2006 4:28 PM CDT
Thanks, Aunt Christie, for updating the pics. The wedding pictures were from Sept. 16th. Connor, Carson and MacKenzie were in Brittany Goellner (now Gandy)'s wedding. Brittany is my part-time EVERYTHING! She helps me every week with the kids. During the transplants, she would even come to the hospital and sit with Connor during the day. She makes it possible for me to take Connor to the clinic/hospital without taking all the children with me. She is such a huge blessing to me and my family. We were so excited that we could share this beautiful day with her.
I also want to thank my niece, Lexie (other wise known as Lexie Lu or Looie to her family). She's been a great help on the weekends and the summer. She's also spent many a nights in the hospital with Connor. It was her sorority, Chi Omega, that funded Connor's Make A Wish trip, too. By the way, she's the beautiful blonde in the picture with MacKenzie in the slide show. I have to thank my Mom and Aunt Cody, too. They have made it possible for me to fly to Boston twice and New York in order to get further treatments for Connor. We don't know what we would do without their help. I really don't know how we would get through it all, if we had to bring all the children with us on our travels. Thank you all so much and we love you.
One picture in the slide show is a picture of Connor in the corporate jet to Boston. That was so awesome. There is another picture of Connor on a deck with the sunset behind him. We were staying at our friends house in Rhode Island the night before we came home from our Boston surgery trip. Thank you to Matt and Tanya Russo for letting us stay at their lake house.
Now on to more serious business. We met with Dr. Kushner on Monday and Connor finished his scans and bone marrow biopsy today. PLEASE PRAY THAT THE BIOPSY IS STILL CLEAN. Here, they take the biopsy sample from the back and the front of the hip bone to get a more accurate sample.
I have to say, he's been a trooper. For the MIBG scan, he has to lay still for 2 hours. If he moves, they have to start that section (30 minute section) over again. He did great. I just read to him the whole time and he listened very quietly. He's a very active and wiggly boy, so this was very hard for him. Then he went under for the biopsy and when he woke up, he sat up and walked right out of the hospital 5 minutes later. We walked 2 blocks and he ate a huge amount of chinese food. You couldn't tell that he'd been asleep 30 minutes ago.
He's enjoying New York and the Rondald McDonald House. Yesterday, we went to the huge Toys R us Store in Times Square and then we walked to Central Park, where we took a carriage ride. Then we went to the FAO Schwartz store. We're going to the Zoo tomorrow with another family (Bronson Balzac's family) before we head home. The Ronald McDonald house is great, too. It's just like a hotel without room service or a cleaning service. It can house 84 families and it has 9 floors. Wow!!!! They have games and activities for the kids every night and they have a great playroom, video game room and 2 great computer rooms. They have been taking great care of us.
After meeting with Dr. Kushner Monday, I was definitely more at ease with this whole process. The good news is that Connor will not get more chemotherapy! Yeah! The doctor explained to me that he would need the high dose chemo which would kill some of his bone marrow again and he would then need more stem cells (bone marrow). Since we do not have anymore frozen stem cells (we used them up with both transplants), high dose chemo is not an option for Connor.
They give the kids this particular high dose chemo because they know that it inhibits the body from making an antibody response against their treatment. The patients can only receive the 3F8 antibody until their body makes an antibody response (HAMA antibody) against the 3F8 mice antibody. The high dose chemo ensures that the children can take the treatment for a longer time, which is better for them.
Because Connor will not receive this chemo, he may make this antibody response soon, possibly after one treatment. We will just have to pray that he can get several treatments in before he makes the HAMA antibody. The doctor said that any antibody is better than none. Another good point is that over time, many children will lose the HAMA antibody or the amount of HAMA antibody in the blood will lower enough for them to get another 3F8 antibody treatment. After learning so much about our bodies' immune system, I'm so amazed at how perfectly God made us. It is just phenomenal how intricately we are designed.
Because this treatment works best on the bone marrow and hard tissue, the doctors here like to see the patients be as "tumor free" as possible. This means that Connor will most likely have to undergo surgery again to remove the two smaller tumors in his chest. After the doctors and surgeons review Connor's scans, they will most likely want Connor to schedule his surgery. We will probably do it here in New York. The surgeon here also has a great reputation for neuroblastoma resections.
At first, I was a little hesitant with the thought of another surgery, but this team of doctors here are very confident in their protocol. This team of doctors is not just an oncology team, they are a neuroblastoma team. They only deal with neuroblastoma patients. They have been studying the 3F8 treatment since 1986. They know how it works best, so if they recommend surgery, I have to believe they know what they are doing. They say that they see the best results when the tumors are resected. Then, the 3F8 antibody can work to the best of its potential. There are so many patients here with neuroblastoma, because they are seeing such good results. It is like the neuroblastoma capital. I guess we will be visiting New York a lot more in the near future.
There is also more good news, they have shortened the treatment time from 2 weeks at a time to one week at a time. Connor will have one week of treatment and then 3 weeks off. This will make his qualiy of life (and mine) so much more managable. Thanks for all your prayers. I think we are finally seeing the direction we are supposed to go.
When we left Dr. Kushner's office Monday, he turned around and looked at Connor with a smile and a giggle. He said, "It's good to know there really is a Connor Cruse out there. He really exists." You see, he's had information on Connor since May, but he's never seen him before. He said he and his colleagues were beginning to wonder if he really existed. haha! I can assure them that they may have questioned his existence before, but they won't ever question it again. He'll make a lasting impression, like he always does.
Again, thanks for your prayers. PLEASE CONTINUE TO PRAY FOR CONNOR'S HEALING!
Thanks,
Joy
Thursday, September 21, 2006 10:21 AM CDT
Connor and I are flying to New York next week to meet with Dr. Kushner himself. I have come to the realization that the only way I will get my questions answered is to see him in person. PLEASE PRAY FOR A SAFE FLIGHT AND PRAY THAT MY CONVERSATION WITH DR. KUSHNER WILL SHOW US THE DIRECTION WE NEED TO GO.
Connor will also do his cat scan again and his MIBG scan again in New York. He'll do a bone marrow biopsy, too. PLEASE PRAY THAT WE HAVE GREAT RESULTS FROM THESE TESTS! NO SIGNS OF CANCER! THANKS!
St. Jude's is looking a little unlikely right now. Either, they do not offer the COG antibody study or Connor does not qualify for their financial help for the antibody study. They have offered two other studies for him, but not the study we are looking for. At this point, it is very unclear whether or not St. Jude's is even a possibility. It looks like we are left with two choices...New York or getting our insurance company to approve our appeal for the COG antibody study to be done here in Dallas. I'm not sure if the approval will happen. That being said, our trip to New York is very important. PLEASE PRAY THAT THE TREATMENT PLAN THAT DR. KUSHNER SUGGESTS WILL BE ONE THAT IS A GOOD OPTION FOR CONNOR....MEANING NOT ANY HIGH DOSE CHEMO OR ANY OTHER THING THAT WILL BE TOO HARMFUL TO HIS BODY OR NEW BONE MARROW.
I have to admit that I'm anxious about my conversation with the doctor. First of all, I know that I will be reminded again of the seriousness of Connor's illness and I'm sure I'll get some lovely statistics, too . I think doctors always feel the need to be 'up front" about the risks of the disease. It's always hard for me to "stomach" the conversation. Secondly, it seems as though this Antibody treatment in New York may be the only option for Connor, so I'm anxious to see what Dr. Kushner is going to recommend for Connor. Tait and I are not undecisive people, so this uncertainty is very difficult. We are ready to get a plan of action.
PLEASE PRAY FOR THE ANSWERS TO COME SOON. PLEASE PRAY FOR ME TO REMEMBER GOD'S FAITHFULNESS TO CONNOR AND OUR FAMILY. PRAY FOR ME TO FOCUS ON THE FACT THAT HE HOLDS US IN HIS LOVING ARMS. I do not want to focus on my fears and anxieties. I want to FOCUS ON HIM. I STILL BELIEVE.....
Scattered words and empty thoughts
Seem to pour from my heart
I've never felt so torn before
Seems I don't know where to start
But it's now I feel your grace fall like rain
from every fingertip washing away my pain
I still believe in your Faithfulness
I still believe in your Truth
I still believe in your Holy Word
Even when I don't see, I still believe
Though the questions still fog up my mind
With promises I still seem to bear
Even when answers slowly unwind
It's my heart I see you prepare
But it's now I feel your grace fall like rain
From every fingertip washing away my pain
The only place I can go is into your arms
Where I throw to you my feeble prayer in brokeness
I can see that this is our will for me
Help me to know Yor are near
I still believe in your Faithfulness
I still believe in your Truth
I still believe in your Holy Word
Even when I don't see, I still believe
Those are words from Jeremy Camp's song "I still believe."
"Now faith is being sure of what we hope for and certain of what we do not see." Hebrews 11:1
"Why art thou cast down, O my soul? And why art thou disquieted within me? Hope in God: for I shall yet praise Him, who is the health of my countenance and my God." Psalm 43:5
I wanted to thank Leann Balzac for sharing with me information about the New York study. She is there right now with her son who has just finished his first round of the antibody treatment there. Our conversation has encouraged me to seek out more information from Dr. Kushner, and hopefully this trip will give us the answers we need. Please pray again for her son, Bronson, that this antibody treatment will kill any residual cancer in his body. Please pray for guidance for the Podeszwa family as they see guidance for their son Alex's future treatment. Also, pray for Alaina, who is suffering from effects of the fifth round of chemo. She has been in the hospital for a couple weeks.
Again thanks for your faithful prayers and support.
Joy Cruse
Thursday, September 14, 2006 1:00 PM CDT
Tait and I are still trying to make our decision about which treatment Connor should do. We hope to have a decision by the end of the week. We are waiting on the recommendation from Dr. Kushner in New York. We sent him Connor's scans. He may recommend more chemo for Connor or he may recommend that Connor does the other study.
I know Connor does not fit the criteria that works best for the NY study, ie he likes to start the treatment 6 weeks post transplant. I feel confident that God will take care of Connor whichever path we choose. I just want to be sure we are heading down the path He wants us to go. We are leaning towards the study at St. Judes. God is starting to give us peace that the COG study at St. Judes will be the best for Connor. Our doctors in Dallas are also starting to lean in that direction. I pray that Dr. Kushner's recommendation will further clarify our decision. There are some new/different treatments at St. Judes for neuroblastoma that may also be helpful for Connor. We'll continue to research those treatments, too.
At first I was leaning towards New York, because that treatment is more "proven" and would take less "faith." Then, I realized I was placing my faith in medicine instead of God's perfect care. Whichever way He leads us, He will take care of Connor and his needs. I can be sure of that.
Also, I wanted to share Connor's cat scan results. It confirmed the MIBG scan, that there is no new growth or spread of disease. Great News! Thank you for your prayers on this matter. PLEASE CONTINUE TO PRAY FOR GOD'S GUIDANCE AND PEACE OF MIND, AND PRAY FOR CONNOR'S COMPLETE HEALING.
Connor and Carson have started playing on a soccer team this fall. This is the first season for both of them. Connor has missed out on so much of the "sports scene" for the last year and a half. I can tell his energy level/stamina is not up there where it should be. He's also still rebuilding muscle tone from the muscle atrophy he developed from all of his time spent in a hospital bed during the transplants and surgery. It will take time for him to regain his strength and endurance. We are hoping that soccer and his karate classes will help with that.
As I was watching Connor practice soccer last Saturday, I was noticing how much better, quicker and stronger the other children were. The other children were scoring goals and were quite good with their skills. I started feeling bad for Connor that he missed so much last year. While these other children were running and playing and developing strengths in soccer or whatever their sports were, Connor was fighting for his life in a hospital bed. I believe I was divulging in a little self pity and envy. I shared my thoughts with Tait and I said I wish I could see Connor score a goal or have his own "shining moment" on the field. And Tait said (in his wisdom), "Just the fact that Connor is on the field today playing soccer, still with us, is his "shining moment." How true! After all that he's been through, he is able to run on a soccer field... although slower than the other kids. He's able to be part of a team like all the other kids... although he may not be the star player.
I suddenly saw the truth. My pride wanted Connor to be like the rest of the kids, able to excel at sports and receive recognition for his abilities. But then I realized Connor is excelling ... not by ways easily measured by onlookers, but by ways that are not so easily seen. He excels in his perserverance, his determination, his bravery and his joyful spirit in the midst of trial. Shame on me for trying to make him fit in a mold that I wanted him to fit into, a mold that is easily seen and recognized by others. I will focus on the special qualities that God has given Connor and I will cherish his "uniqueness." God made Connor just the way He wanted him.
Mike Harris wrote a song, "Find Your Wings," that sums up my prayer for Connor and all that I wish for him to be.
It's only for a moment
that you are mine to hold
The plans that Heaven has for you
will all too soon unfold
So many different prayers I'll pray
for all that you might do
But most of all I'll want you to know
you're walking in the truth
And if I never told you
I want you to know that
as I watch you grow
I pray that God would fill your heart with dreams
and that faith gives you the courage
to dare to do great things
I'm here four you whatever this life brings
So let my love give you roots
and help you find your wings
May passion be the wind that leads
you through your days
And may conviction keep you strong
and guide you on your way
May there be many moments that make your life so sweet
Oh, but more than memories
I pray that God would fill your heart with dreams
and that faith gives you the courage
to dare to do great things
I'm here for you whatever this life brings
So let my love give you roots
and help you find your wings
It's not living if you don't reach for the sky
I'll have tears as you take off
but I'll cheer you as you fly
So let my love give you roots
and help you find your wings.
"For I know the plans for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
"for you created my inmost being; You knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:13-14
In Christ,
Joy Cruse
Wednesday, September 6, 2006 9:52 PM CDT
First of all, thank you, Christie, for "Ode to Joy." How delightful! I've always loved that song (I wonder why?) and I loved your poem. You're the best! Happy birthday to you, too, on Sunday. I believe you are 35, right?
As for Connor, his future path is still unclear. We got good news from NY Friday saying that the insurance has approved their antibody treatment. I still need to confirm this with our insurance company. For the study, they are ordering a cat scan, and bone marrow biopsy, along with the MIBG we did a couple weeks ago.
I finally got to speak with the doctor in NY. Because Connor is so far out from his transplant and any kind of chemo, he will most likely recommend that Connor does a couple more rounds of chemo. Depending on the scans, he will recommend either a high or low dose chemo. The next question is "Can Connor's body or new bone marrow tolerate more chemo?????????????????" Will his counts rebound? Not sure. With the other antibody study, he would not have to do chemo before the study. I was leaning towards NY until I spoke with the doctor today. I'm just really unsure. NY likes to get them right after high doses of chemo so that their immune system will be low and their cancer cells should be at an all time low. I guess their treatent is more effective this way???? The doctor in NY did say that he thought the other study was also good. PLEASE, PLEASE PRAY FOR CLARITY ON THIS MATTER. I will go wherever God leads us. I just want to know where he is leading.
Our next step is to have a cat scan tomorrow and a bone marrow biopsy Friday. PLEASE PRAY FOR A CLEAN BIOPSY AND A CAT SCAN THAT SHOWS NO NEW GROWTH. We will then send this info to NY and the doctor there will then make his recommendation. We will go from there.
We did get some good news today. Connor's MIBG scan was good. This is the scan that "lights up" where there are neuroblastoma cells. It will light up whether the cells are dead or alive, but there will be little uptake of dye if the cells are dead. Connor's abdominal area had less uptake of dye, because of the removal of most of the tumor. That's good. Also, there were no new spots. The other old tumors lit up as they did last time, but some were less dark. They were the same size (as was expected), but some had a little less "uptake." Overall, they were pleased. We are seven months out from transplant and no new growth. That's good. 4 years and 5 months to go.
I was hoping for more clarity after my conversation with the doctor in NY, but he made some comments that left me more unsure. Before our conversation, I did not have the results of the MIBG scan, and I felt like he expected there to be new growth. Less than an hour later, I got the results of Connor's MIBG scan and I was relieved to find out that his disease was stable. I think God planned the timing of that to ease my fears and remind me that He is still there. He is in control.
"He heals the broken-hearted and binds up their wounds. He determines the number of the stars and calls them each by name. Great is our Lord and mighty in power; his understanding has not limit." Psalm 147:3-6
This verse reminds me of a song by Selah, called "All My Praise."
You are seated on Your thrown n Heaven
And You see all of us down here
And You have promised You will not abandon
So I shall not fear.
Even in the shadow of death
I will praise you
Even in the valley,
I will say
Holy, my God
You are worthy of all my praise
Holy, my God
You are worthy of all my praise
You made every star
And you taught it how to shine
You knew my name before there was time
And this is just part of your glorious design.
Hallelujah, Hallelujah!
Thanks again for all your prayers.
In Christ,
Joy
Wednesday, August 30, 2006 12:37 AM CDT
I'm still gathering information about the different antibody studies. At this point, our insurance company is saying that they will not pay for any of these treatments. They do not pay for anything experimental. We are appealing their decision. I spoke with a doctor in Boston who also does the COG study (the one we could do in Dallas). They have had several patients in the study there, where as Connor would be the first patient to do this study in Dallas. She said most insurance companies pay for Phase II studies, like this COG antibody study. She is going to write a letter to the insurance company to further explain the study and their results in Boston. If the insurance company does not pay for it, we could do the COG study at ST. Judes, where they will fund what the insurance does not pay for. Also, the NY study has funding to help parents pay for what the insurance does not pay for.
I also spoke with the doctor in Boston about the differences of the 2 studies (the one in NY and the COG study). She said that both studies show that the patients respond to the treatment while they are on it. The difference is that the treatment in New York has been around longer, so they have been able to follow these kids for years after the study. They are having good results with the NY study, and many of the kids are not relapsing. The COG study is newer, so they have not had the opportunity to follow these kids for very long after treatment. The long term results are not yet known. They are hopeful and expect similar results to the NY study, but the results are still pending. I have also spoken to a couple moms whose chidren have done the NY study. They have been very pleased with it and they have also seen good results.
At this point, I'm leaning heavily towards the NY study. I called the doctor up there last week, but he was not available. His secretary said that the doctor thinks Connor is too far out from the second transplant for his antibody study, so he thinks we should do the COG study. Uggghhhh!!!! Not what I wanted to hear. For the NY study, they want Connor's immune system to be weak (his white count to be low). The doctor does not know Connor's current white count, which is still low. The radiation and Accutane have kept it from coming up very high. I wanted to share this info with him, but he's out of town until tomorrow and he would prefer to speak with Connor's doctor. This is frustrating to me, because I have many questions for him myself and I don't trust anyone else to be as good of an advocate for my son as Tait and I are. I can fax the doctor my questions in the hope that he will answer them. He is supposed to talk to Connor's doctor tomorrow. PLEASE PRAY THAT THEY ACTUALLY GET TO SPEAK TO EACH OTHER ON THE PHONE AND THAT CONNOR'S DOCTOR CAN GET AND GIVE THE INFO THAT WE NEED.
At this point, I have a lot of confidence in the NY study, but not as much in the COG study. If the doctor in NY won't let us do his study because Connor's white count is too high, PLEASE PRAY THAT THIS IS A DECISION THAT GOD HAS DIRECTED. I think that I will be fearful of Connor's long term results if we have to do the COG study, but if that is where God wants Connor to be, PLEASE PRAY THAT WE WILL HAVE PEACE ABOUT THAT DIRECTION. ABOVE ALL, PLEASE PRAY FOR THESE DOCTORS AS THEY MAKE DECISIONS FOR THE WELFARE OF MY SON. I admit that I have a hard time releasing that control over to them. PRAY THAT GOD WILL DIRECT CONNOR'S PATH, AS HE HAS DONE FOR THE PAST 15 MONTHS.
While I was typing this, I received a phone call from NY. Dr. Kushner's asst. said that he will look over Connor's case tomorrow when he gets back. Also, the hospital's insurance specialist is very good about working with insurance companies and he can often times get their cooperation. Yeah!!!! PLEASE PRAY THAT GOD WILL TAKE CARE OF ALL THESE DETAILS, IF NY IS WHERE HE WANTS US TO BE.
As always, thank you so much for all your prayers. I know we could not travel this long road without you. Please continue to pray for our other neuroblastoma friends, Alex, Raoul, Alania, and Bronson.
For those of you who live in Dallas, Connor will be on Channel 11 News this Friday around 6:40 on the 6:00 am news, 9:55 on the 9:00 am news and possibly on the 4:00 pm news.
"Cast thy burdens upon the Lord and He shall sustain Thee." Psalm 55:22
Forever grateful for your prayers,
Joy
Monday, August 21, 2006 1:29 PM CDT
School has begun. Connor had his first day of Kindergarden on Wednesday. It was great! I've learned, through this journey, not to take for granted when Connor has a chance to do what other "healthy" kids do. It reminded me of last year when Connor went to his first day of Preschool. He had just finished his fourth round of chemo that morning, and Tait got him discharged early so he could make the first day of school. Connor was tired and feeling puny, but he was so excited to be at school with his new classmates. This year, it was so nice that Connor could enjoy his first day, without feeling weak or puny. When I picked him up from Kindergarden that first day, he said "Kindergarden is great!" It is so nice seeing Connor enjoy himself. I think Connor is tired of all his "hospital" stuff.
When I updated the journal a few weeks ago, I gave an update on the pathology report. The report said that 90-95 f the tumor was dead, but they were not sure about the other 5-10 At the time, they felt like the small percentage was dead. Now, the final report is saying that it was actually showing some "active" neuroblastoma cells. The cells may have been in the process of dying, but they couldn't be sure. So, what that means for Connor is extra treatment. The doctors said that the Accutane COULD POSSIBLY take care of any residual disease, but it would be better if Connor had more treatments to help ensure that the cancer does not come back.
The therapy they are recommending is the monoclonal antibody therapy I mentioned a couple months ago. These therapies aer still in Stage 2 of experimentation. They have been working with this antibody therapy at Sloan Kettering in New York for several years and they have seen some promising results. If we were to do the therapy in New York, we would be there for 2 weeks on and 3 weeks off for a minimum of 4 rounds. It is taken care of on an out-patient basis. Luckily, there is an antibody study opening up in Dallas that is similar, but it is somewhat different. It is like the study done at St. Judes Hospital. This therapy would be done on an in-patient basis for 3 days and he would have 25 days to recover. He would do this up to 4 times, if he is responding to the treatment.
The antibody therapy is used to stimulate the patient's own immune system to fight the cancer. The antibody is given to Connor intraveniously and the antibodies then attach to the neuroblastoma cells. Because they are mice cells, the antibodies will trigger Connor's immune system to start attacking the mice antibody cells, and his immune system will therefore also be attacking the neuroblastoma cells. Connor will also be given meds to increase his immune system capabilities.
The differences between the treatments is the 3F8 antibody used in New York is made solely from mice and the antibody used in Dallas is part human. Supposedly, they both target the neuroblastoma cells. Also, they use different agents to stimulate the immune system.
We have to choose between the therapies, and it is hard to decide which one is better. There are no studies that compare the two treatments. Most doctors feel that the two treatments are similar enough and should have similar results. The treatment in New York has been around longer and has been tested more often. I guess it is more proven. But it would also disrupt our family the most. Also, our insurance may not pay for all of this, because it is still in the experimental stages. Because these therapies are part of a study, some of the treatment is free of charge. We now have to determine which would be less expensive. New York may be less expensive, because it is an out-patient therapy. As you can see, we covet your prayers AGAIN! You just thought you were off the hook.
At first, I was disheartened that Connor would have more treatments when we thought we were coming to the end of the road this fall. But, really, it is just a reminder that this journey is not a 5K or 10K, this is a marathon. Connor will not be out of the woods or "cured" until 3-5 years post transplant. We are only 6 1/2 months into that 3-5 year wait. There is some comfort in knowing that we will be actively fighting this disease longer, rather than sitting and waiting. Maybe, his chances will be better if we can continue to actively "fight" longer.
PLEASE PRAY FOR WISDOM IN OUR FUTURE DECISIONS AND PRAY THAT CONNOR CONTINUES TO GROW STRONGER EVERY DAY SO THAT HE WILL BE ABLE TO ENDURE THE NEXT ROUND OF TREATMENTS. ALSO, PRAY THAT THE CANCER IS DEAD NOW AND THAT THESE TREATMENTS WILL KEEP THE CANCER FROM COMING BACK AND WILL KILL ANY RESIDUAL DISEASE. PLEASE PRAY FOR STAMINA, STRENGTH, FAITH, COURAGE AND PEACE AS WE CONTINUE ON WITH OUR MARATHON.
As we continue with our marathon through this valley, I draw strength from the words from Ginny Owen's song, "If You Want Me To."
The pathway is broken
And the signs are unclear
And I don't know the reason why You brought me here
but just because You love me the way that You do
I will go through the Valley if You want me to
Now, I'm not who I was when I took my first step
and I'm clinging to the promise
You're not through with me yet
So if all of these trials bring me closer to You
I will go through the fire if You want me to
It may not be the way I would have chosen
When You lead me through a world that's not my own
But You never said it would be easy
You only said I'll never go alone
I'll remember the suffering Your love put You through
And I will go through the Valley
If You want me to
"Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus." Phillipians 3:13&14
In Christ,
Joy
Tuesday, August 15, 2006 3:20 PM CDT
After we returned from our Make A Wish trip, I tried to update the website but my computer was down. I am now at a local coffee shop using their computer to update the website. If the spelling/grammar is bad I apologize. I have 30 minutes to update.
The trip was wonderful. We spent six days at Disney, Universal and SEa World. The Make A Wish organization does a fantastic job of organizing these trips. Everything was taken care of for us. We got free parking and free stroller rentals at the park. We got some spending money and free ice cream every day. The best thing was that we got to go to the front of all the lines for the rides and to meet the character. We figured out that it saved us almost 8 hours a day. I don't think I ever want to go back, because you just can't have a better experience than that. Who wants to stand in line and wait for a ride, when you can just go to the fron of the line. Anyway, the kids had a great time.
After the amusement parks, we went on a 4 day Disney Cruise. The kids really enjoyed going to a real beach and we had fun swimming with the sting rays at Disney's Island. The cruise was a great mixture of events for the kids and adults. We adults even had some down time. It was great. Usually, after a family vacation, Tait and I are worn out, but the cruise was great for giving us some down time, too. I highly recommend it. We'll have pics for the website soon.
As for Connor, he is healing well. He's been favoring his left side. He's been afraid to run or swim, but the night we returned from our trip, Connor ran across the room. He said, "Mom, watch this!" He ran across the room with a big grin on his face. He said, "I don't feel the pain anymore." Then, he sat down at the table and had a PBJ sandwich. His appetite has been low since he's been on the Accutane and he's off the accutane now so his appetite is getting better. He actually lost 5 pounds from the surgery so we are anxious for him to gain weight. We were very excited to see signs of his appetite coming back. When he sat down at the table to eat, he said, "I can run now and I'm hungry again. I'M BACK, BABY!" I think we're going to nickname Connor the come back kid. He keeps getting more treatments that knock him down, but he just keeps coming back swinging.
We had Connor's Make A Wish party on Sunday. It was a super hero theme party to also celebrate Connor's "super" fight against cancer and to thank so many people for helping us thru this difficult jouney. We had bounce house slides and obstacle courses, face painting, a Superman balloon artist, a cartoon caricature artist, swimming and a dunk tank. There were so many people in our back yard. It was great seeing so many people celebrate with us. As I stood looking over the crowd, it dawned on me how many people have truly helped us. We are so blessed to have the help of so many people.
I have to go now, but I will update later on the future plans for Connor's treatment. The doctors are recommending some new treatments for Connor to keep the cancer from relapsing.
In Christ,
Joy
Monday, August 7, 2006 6:41 PM CDT
We are currently sailing the high seas near the Bahamas. We are on Connor's Make A Wish trip. We're having a great time. We spent six days at Disney World, Universal and Sea World. We extended the trip to include a Disney Cruise. Grandma and Grandpa came along. WE are tired, but loving every minute of it. I"ll give more details later.
Sorry that I haven't updated the website sooner, but we all fall into bed after a long day at the theme parks. The great news from the pathology report came at such a great time. We are celebrating every day on our trip. I'll update again later this week.
In Christ,
Joy
Friday, July 28, 2006 3:56 PM CDT
"I waited patiently for the Lord; He turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put their trust in the Lord. Blessed is the man who makes the Lord his trust. Many, O Lord, are the wonders you have done... too many to declare." Psalm 40:1-5
I have been saving these verses for this very day. We had a great pathology report today. Dr. Shamberger said that the report was "very encouraging." He said that 50% of what he resected was just structural tissue, like connective tissue, nerves, blood vessels, etc and the other 50% was the tumor. As they examined the tumor 90-95% was dead mature ganglioneuroma, which is completely dead tumor. The other 5-10% was what they called blastocysts, which were mature cells that were mostly likely dead also. These blastocyst, which if they were alive, could turn into cancer. Most likely, these cells are dead, but they cannot be 100% certain unless they had a previous biopsy, done at diagnosis, to compare it to. As they do not have a comparison biopsy, they are making their best guess that these cells are dead, also.
As I've mentioned before, Neuroblastoma has a 50% chance of recurrence, where there is no cure. The relapse occurs when these blastocysts multiply and start growing into cancer. Connor is taking a drug called Accutane for six months. The reason he takes this drug is that it interferes with the multiplication of these blastocyst cells, and it matures these cells which ultimately kills them. The doctors are very hopeful that the use of this drug will greatly decrease the relapse rate with these kids. PLEASE PRAY THAT THE ACCUTANE WILL KILL ANY OF THESE CELLS THAT MAY BE LEFT BEHIND.
As I was speaking with the nurse practitioner at Children's Med Ctr today, he mentioned that he has rarely seen a child that had such extensive disease as Connor's respond so well to treatment. First of all, he has made it 14 1/2 months from diagnosis. Many of the children, with disease like Connor's, don't make it this long with their battle against cancer. Also, he said many of these children (with extensive disease) do not respond to treatment the way that Connor has. His cancer obviously responded very well to the treatment. He said that he was AMAZED at how well Connor is doing, given the extent of his disease at diagnosis. As for me, I'm not surprised at all. Nothing is too hard for God and I know that God has been watching over Connor from the very beginning.
"With men it is impossible, but not with God; for with God all things are possible." Mark 10:27
I just want to thank all of you for all your faithful prayers. I know that Connor would not have had such a favorable outcome without you. PLEASE CONTINUE TO BE PRAYER WARRIORS FOR HIM. Connor's many battles have been victorious, but the war is not over yet. THANKS AGAIN FOR ALL YOUR PRAYERS; WE CAN NEVER REPAY YOU FOR YOUR FAITHFULNESS.
Also, thanks for your prayers for Alex. He has successfully completed his first transplant. Also, Bronson had his tumor removed Wednesday and he is doing well. Alaina is waiting on her bone marrow results. Please pray for our friend, Rahul. He is fighting a blood infections at Children's Med Ctr, which is always difficult when your immune system is weak.
In Christ,
Joy
Saturday, July 22, 2006 5:34 PM CDT
Saturday
Connor was released from the hospital yesterday. We are currently resting at the McAvoy's home just outside of Boston. We will be flying home to Dallas on Monday. Connor is slowly getting his strength and appetite back. He was so excited about getting out of the hospital yesterday.
Every time Connor is in the hospital, he never complains about it or whines about going home. Until the day he's going to be released, then, that is all he can think about. "When are we leaving? Can we go home yet?" All day long!!!!! I'm amazed that he can wait until the last day to start asking those questions. He's definitely more patient than I am.
Anyway, we are glad to be out of the hospital and we're looking forward to our trip home. Since we missed our flight home on Friday, Connor and I will be catching a ride with another corporate jet. I think we're getting spoiled!
I spoke with the oncology doctor yesterday and the pathology report is not back yet. She said it is taking longer because the tumor was so big. They are looking over every inch of it. I'll post the resutls as soon as we get them next week. PLEASE KEEP PRAYING FOR A CLEAN PATHOLOGY REPORT.
We wanted to say "hi" to our BMT team back at children's Med Ctr in Dallas. Thanks for checking on Connor's progress. Also, Happy Birthday to Aunt Cody, Grandpa Vilhauer and Papa Burt! We're so glad to have you "young people" in our lives.
JOY
ALL OF THE TUBES ARE GONE! Yeah!!! The took out the catheter Monday, the NG tube Tuesday and the chest tube a couple hours ago. We are heading down to radiology to do another chest x-ray to make sure his lungs aren't filling up with fluid again. PLEASE PRAY THAT THEY ARE CLEAR, SO WE DON'T HAVE TO PUT IN A NEW CHEST TUBE. If he eats and drinks well, takes his meds orally and moves around well tomorrow, me may be released from the hospital. We should be released Thursday or Friday.
Our Friday flight home may be postponed until the following Monday. Ugghhh! I miss my kids/family and I'm ready to go home. But, we'll do what's best for Connor. I really don't see him walking thru Logan Airport and sitting on the plane for four hours right now. I think he needs a little more healing. We'll see what tomorrow brings. And, thanks to Kathy McAvoy for sitting with Connor everyday so that I can get a little break. You're most appreciated. Also, thanks to Tonya Russo for sitting with Connor tonight so I can update the website.
Still waiting on the pathology report, but otherwise, everything is going well. PLEASE CONTINUE TO PRAY THAT THE PATHOLOGY REPORT SHOWS THAT THE TUMOR IS DEAD!!!!!!!I'm so amazed at how God protects my little guy. He watches over him every minute. I know that God kept him safe during the surgery, because so much could have gone wrong. Praise God that everything went so well.
"Fear not, for I have redeemed you; you are mine.
When you pass through the waters, I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.
For I am the Lord, your God,
the Holy One of Israel, your Savior" Isaiah 43:1-3
That pretty much somes up the last 14 months of our lives.
Thanks for all your prayers!!!!!!!!!!!!!!!!!!!!!!!
JOY
Sunday, July 16, 2006 3:44 PM CDT
Sunday
Connor is doing well. He's still got his chest tube, NG tube in his nose, a catheter, and 2 IV's, but we're hoping to lose some of that in the next 2 days. When his bowels "wake up" from the anesthesia and surgery, we can remove his NG tube. When he can stand to urinate, we can lose the catheter. When his oxygen levels are better, we can lose the chest tube and when he can eat, he'll lose his IV's. PLEASE PRAY FOR ALL THESE THINGS TO HAPPEN.
He's still in a lot of pain, but he's not getting as much morphine as yesterday. Twice, he walked to a chair and sat up for 30 minutes yesterday, and he'll do the same today. Hopefully, we can convince him to walk a little further tomorrow. He still has a lot of congestion in his lungs and it hurts to cough it up. PLEASE PRAY THAT THE PAIN WILL LET UP SOON, SO THAT HE CAN START COUGHING THAT STUFF UP AND HE CAN START MOVING AROUND A LITTLE MORE. Thanks for all your prayers.
Please pray for our friend, Bronson (www.caringbridge.org/visit/bronsonbalzac). He had a cat scan done last week and we are praying that the tumors have shrunk enough, so that the surgeon can remove it. Also, pray for Alaina (www.caringbridge.org/visit/alaina). She will have a bone marrow biopsy Thursday and we pray that the bone marrow is clean. And pray for Brent McCreesh. He has been neuroblastoma free for a year and he is having scans done on Tuesday to make sure the cancer is not back. Thank you so much for praying for all these other children with neuroblastoma. These children need our prayers so much.
Joy
Connor was moved out of ICU today. He's doing very well. He still has the chest tube in, but he's doing well breathing on his own. Luckily, they were able to take the breathing tube out last night before they brought him up to the ICU. He's on morphine for the pain, so he's slightly groggy. But, he's not complaining of a lot of pain. I think the nurses are managing his pain quite well. He also has the tube in his nose, which he hated at first. They had to restrain his hands because he wanted to pull it out, but he's doing better with that now, so he's not restrained any longer. That will stay in until his stomach and bowels start working. We should be in Children's Hospital until Tuesday or Wednesday.
Yesterday was quite a long day, but God watched over Connor the whole time. We showed up at 6:15am for pre-op, Connor was put under at 8:00, and the surgeon started cutting at 9:00. We would receive news from the OR every 90 minutes, with reassuring words that Connor was doing well. He received a lot of blood during the surgery, but he remained stable the whole time.
After surgery, the surgeon gave us his report. He had to slowly and methodically remove small pieces of the tumor. The tumor was so intertwined between organs and blood vessels, that he had to chisel little pieces off bit by bit. He said he removed the tumor around the left kidney first and it came off easier than expected. He also said the kidney looked very good, considering the amount of chemo and radiation Connor has received. Praise God!!
He then followed the tumor around behind the spine to the right side of Connor. That is where it got risky. It was tight in between the pancreas, liver and stomach. It was also plastered against these organs. He felt it was too risky to chisel this part of the tumor away. It could cause damage to Connor that would be life threatening or cause long term damage. We were praying that God would guide the surgeon's hands, so if he felt it was too risky, we are glad that he backed away and didn't put Connor at risk.
He said the tumor looked dead to him. It was very "fibrotic" and hard. It didn't look "vascular." He has seen many neuroblastoma tumors and he has a pretty good opinion on the matter. Of course, we will ultimately have to wait for the pathology report sometime next week. PLEASE PRAY THAT THE TUMOR IS COMPLETELY DEAD. Based on that information, we will decide if and when Connor will have a second surgery to get the two small tumors out. He also said it was one of the worst cases he has seen. He said the tumor doesn't usually travel from one side to the other and it was near some unusual places that he hadn't seen before. He did take a few lymph nodes that had been affected. PRAY THAT THOSE ARE DEAD ALSO. Dr. Shamberger's comments just reminded me of how far God has brought us. Nothing is impossible with Him.
"With men it is impossible, but not with God: for with God all things are possible.." Mark 10:27
We are so grateful for Dr. Shamberger. He did the whole surgery without any breaks for food or sitting down. He had a back ache when he was done, after standing over Connor for 10 hours. He's just an amazing surgeon and the staff here at Children's has been awesome. I'm so grateful that God protected Connor during this whole surgery. He definitely "dodged some big bullets."
"Have mercy on me, O God, have mercy on me,
for in you my soul takes refuge.
I will take refuge in the shadow of your wings,
until the disaster has passed.
I cry out to God Most High,
to God, who fulfills his purpose for me.
He sends from Heaven and saves me,
rebuking those who hotly pursue me;
God sends His love and His faithfulness.
I will praise you, O Lord, among the nations;
I will sing of you among the peoples.
For great is your love, reaching to the heavens;
your faithfullness reaches to the skies."
Psalm 57:1-3,9-10
I love you, O Lord, my strength.
The Lord is my rock, my fortress and my deliverer;
my God is my rock, in whom I take refuge.
He is my shield and the horn of my slavation,
my stronghold.
I call to the Lord, who is worthy of praise,
and I am saved from my enemies.
The cords of the grave coiled around me;
the snares of death confronted me.
In my distress I called to the Lord;
I cried to my God for help.
From his temple he heard my voice;
my cry came before him, into his ears."
Psalm 18:1-6
THANK YOU FOR ALL YOUR PRAYERS. THEY SUSTAINED US THROUGH THE LONG HOURS. WE WERE FILLED WITH UNEXPLAINABLE PEACE THRU THE WHOLE SURGERY. WE CANNOT THANK YOU ENOUGH FOR YOUR PRAYERS AND SUPPORT.
Please pray for Alex (www.caringbridge.org/visit/alexanderpodeszwa)while he is undergoing his first bone marrow transplant.
In Christ,
Joy
Thursday, July 6, 2006 5:21 PM CDT
Wednesday, July 12
We arrived in Boston safely. The ride was great. The corporate jet was great fun for Connor and myself. Now, that's the way to fly!
We spent yesterday in Children's Hospital running tests and filling out paperwork, but today we had a free day. By the way, we were thrilled to learn that Connor's echo cardiogram was normal, so there was no damage to his heart from the chemo. Praise God! We spent today sight seeing with our friends, the Christiansen's. Thanks, Kathy, Carley, Sarah and Abbey. We had a great time riding the Ducks with you.
I just wanted to write a short note to let everyone know that Connor's surgery time is scheduled for 7:30 am tomorrow morning. Thanks in advance for all your prayers.
"Happy Birthday, Lexie Lu! We love you!" -
a note from Connor
We just got back from the clinic and all of Connor's counts rose. Yeah!!!!!!!! His platelets even doubled. The doctors were pleased. Now they feel more confident that it was the radiation and the Accutane that kept his counts from coming back up. Thanks for all your prayers for that.
This week has been a lot of fun with all the holiday festivities. Connor has enjoyed watching fireworks, swimming, bouncing on jump houses, eating LOTS of food, watching 4th of July parades and playing with friends.
We're enjoying our last week before we head to Boston next week. We leave for Boston on Monday for some early tests and then the surgery will be bright and early Thursday morning. Connor should be released from the hospital by the following Monday or Tuesday. He will then have a post op appt with Dr. Shamberger on Friday, the 21st and we'll fly home after that appointment.
We are a little excited about our travel plans. Our friends, Elizabeth and Patrick Collins, told us about the Corportate Angel Network. This is a non profit network that provides flight services for children with cancer or critical illnesses. If there is a corporate jet flying from Dallas to Boston on Monday, the 10th, we can catch a ride with them. They called today and there is a corporate airplane heading to Boston on Monday, so we get to catch a ride on the corporate airplane. Connor will have a blast.
PLEASE PRAY FOR A SAFE FLIGHT. PRAY FOR THE SURGEON TO GET ALL THE TUMOR OUT AND THAT THE TUMOR IS COMPLETELY DEAD. PLEASE PRAY THAT GOD WOULD GUIDE THE SURGEONS HANDS AND THAT GOD WOULD PROTECT CONNOR FROM ANY POSSIBLE PROBLEM. PRAY THAT THE TUMOR IS EASIER TO GET OUT THAN THEY THOUGHT IT WOULD BE BASED ON THE CAT SCAN. PRAY THAT GOD WOULD KEEP CONNOR SAFE IN HIS LOVING HANDS.
Tait and I will be walking by faith for the next couple of weeks. Pray for our peace and for our faith to be strong, like the words from Jeremy Camp's song, "Walk By Faith."
Help me to win my endless fears
You've been FAITHFUL for all my years
With the one breath you make me
Your grace covers all I do.
Well I will WALK BY FAITH
Even when I cannot see
Well because this broken road
Prepares YOUR WILL for me.
Please pray for our new friend, Alaina Thompson (at www.caringbridge.org/visit/alaina) She was diagnosed with neuroblastoma in May and she just finished round 2 of chemo. Also pray for Alex (www.caringbridge.org/visit/alexanderpodeszwa) as he is starting his first autologous bone marrow transplant this week.
In Christ,
Joy
Friday, June 30, 2006 3:17 PM CDT
We have had an enjoyable week so far. Connor had a break from the clinic this week, so we have been enjoying the pool and the beautiful weather. We've been enjoying play dates with our friends, too.
We will go to the clinic next week to check his blood counts. PLEASE PRAY THAT HIS COUNTS HAVE COME UP CONSIDERABLY SINCE LAST WEEK. They definitely need to be better before surgery. He has been off of the Accutane (oral chemo) for a week now and Accutane can hinder his counts from improving. Hopefully, being off of the Accutane for a couple weeks will help his counts rise.
We are still waiting for a second opinion from the surgeon in New York. He specializes in the removal of neuroblastoma tumors, as does Dr. Shamberger in Boston. Hopefully, his opinion will help add clarity to our decision about the surgery. The more we find out about Dr. Shamberger and his reputation, the more confidence we have in his abilities. I am definitely having more peace about the surgery, as I continue to research the data on resecting these tumors and I research the reputation of Dr. Shamberger. PLEASE CONTINUE TO PRAY FOR GOD'S GUIDANCE AND PEACE ABOUT WHETHER OR NOT TO CONTINUE ON WITH THE SURGERY IN JULY.
I know the surgeon is hopeful that he can get the whole tumor out, but he's not sure. PLEASE PRAY THAT GOD WOULD GUIDE HIS HANDS DURING SURGERY AND THAT THE SURGEON WOULD BE ABLE TO REMOVE ALL OF THE TUMOR. PRAY THAT GOD WOULD KEEP CONNOR SAFE DURING THE SURGERY.
I know there are several risks because of the location of the tumor - the main risks are damage to the aorta and large blood vessels in the abdomen.
Connor had a great time last week helping with the Children's Medical Center Chip Moody Golf Classic and Auction. We also set up his Lemonade Stand at the golf tournament. His lemonade stand raised about $500. The tournament and auction raised approximately $200,000 net profit. Everyone at Children's Medical Center did a great job planning the event and we are so glad that so many people were generous in giving money to this cause.
We are really enjoying our summer. It is just great not spending so much time at the hospital like last summer. I find myself enjoying every minute. I'm not bothered THIS summer by being a "taxi driver" for four kids, or by sitting in 90+degree weather in Texas, or bothered by constantly finding ways to entertain four children this summer. I don't even mind being worn out at the end of each day. I just keep reminding myself that all of this is SO MUCH BETTER than watching Connor spend his summer going thru six rounds of intense chemo.
I have a new appreciation for the "dog days of summer." I enjoy the little things that I passed over summers in the past. I find myself rejoicing in the simple pleasures of summer, like Connor being able to go to a sports camp or just swim in a pool. Last year, I would listen to other families plan vacations or talk about camps their children enjoyed or I would watch other children swim in a pool while Connor sat on the perimeter watching. I'm not saying all this because I feel sorry for myself. I'm saying it because I'm grateful that we are where we are right now in this journey. I'm rejoicing that Connor and my other kids are enjoying every minute of this summer.
Some one e-mailed me this poem that a teenager wrote. She has cancer and she is struggling for her life. Her words echo my thoughts.
SLOW DANCE
Have you ever watched kids on a merry-go-round?
Or listened to the rain slapping the ground?
Ever followed a butterfly's erratic flight?
Or gazed at the sun into the fading night?
You better slow down.
Don't dance so fast.
Time is short.
The music won't last.
Do you run through each day "on the fly"?
When you ask "How are you?" Do you hear the reply?
When the day is done, do you lie in your bed
With the next hundred chores running through your head?
You better slow down
Don't dance so fast.
Time is short.
The music won't last.
Ever told your child, "We'll do it tomorrow?"
And in your haste, not see his sorrow?
Ever lost touch, let a good friendship die
Cause you never had time to call and say, "Hi"
You'd better slow down.
Don't dance so fast.
Time is short.
The music won't last.
When you run so fast to get somewhere
You miss half the fun of getting there.
When you worry and hurry through your day,
It is like an unopened gift...thrown away.
Life is not a race.
Do take it slower.
Hear the music
Before the song is over.
In Christ,
Joy
Tuesday, June 20, 2006 9:46 PM CDT
Thursday, June 22
We went to the clinic today and his counts are still low and his platelets came down a little bit. PLEASE PRAY THAT HIS COUNTS COME BACK UP AGAIN.
His counts were doing great until radiation and then they started coming down. It is normal for radiation to affect his blood counts. Also, the accutane medicine that he is taking now can also lower counts and keep them from rising. Connor will have a 2 week break from the Accutane, so hopefully his counts will start rising now.
Thank you for your prayers for Ryan. He passed away Tuesday. The doctors are still baffled as to what caused this attack on his lungs. They are guessing it was some "super virus." How difficult it must be for his family to not have any answers as to what happened to Ryan. It was like an invisible enemy. Please pray for his family.
My prayer for his family is "May the Lord bless you and keep you; the Lord make his face shine upon you and be gracious to you; the Lord turn his face toward you and give you peace." Numbers 6:24-26
Today, the nurse practitioner (who has taken great care of Connor) asked us how we can "keep it together" during this whole ordeal. He said we just take everything in stride. I told him it is because of two things. First of all, we have a great support team of friends and family members. We have so many people praying for us and it has made such a huge difference. Secondly, our Faith has sustained us. This is such a HARD situation to live through, and it would be SO MUCH HARDER without God. When we have moments of weakness or fear, we turn to Him. We are so blessed to have His peace, comfort and strength.
"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." Isaiah 41:10
Tuesday, June 20
Great News today!!!!!!!!!!!!!!!!
The bone marrow is still clean!!!!!!!! Thank you so much for your faithful prayers.
We feel so blessed right now. God has taken such great care of Connor through this whole ordeal. We are just enjoying every minute this summer. He's been able to go to baseball and soccer camp, and he's learning how to swim. It's been great to add some normalcy to our lives.
"Call upon me in the day of trouble, I will deliver you, and you will honor me."
Psalm 50:15
"Call unto me, and I will answer thee, and show thee great and mighty things." Jeremiah 33:3
"I love the Lord because He hears and answers my prayers. Because he bends down and listens, I will pray as long as I have breath." Psalm 116:1-2
"Love never gives up, never loses faith, is always hopeful, and endures through every circumstance." I Corinthians 13:7
Please pray for Connor's Clinic Appt. on Thursday. The doctors are concerned about his platelet count. It has continued to go down since radiation. It could just be due to the radiation. If it continues on this downward spiral, they are concerned that there may be some residual cancer left. We are believing that it is just from the radiation. Please pray that his platelets and white counts come up.
Please continue to pray for Ryan Hall. He is still on the ventilator. He needs our prayers tonight and the rest of this week.
Thanks for your prayers.
In Christ,
Joy
Thursday, June 15, 2006 4:57 PM CDT
Connor had his bone marrow biopsy today. We will get the results next week. We have an appointment scheduled next Thursday with Connor's doctors to go over the results of the test. PLEASE PRAY THAT THE BONE MARROW IS STILL CLEAN OF CANCER. PRAY FOR OUR PEACE AS WE WAIT FOR THE RESULTS OF THE TEST. I truly believe that Connor is healed and there will be no evidence of cancer in his bone marrow.
"Do not be anxious for anything, but in everything, by prayer and repetition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Phillipians 4:6&7
I love the words from the following song, "Strong Tower" by Kutless. They are very comforting to me.
In the middle of my darkness
In the midst of my fear
You're my refuge and my hope
When the storm of life is raging
And the thunder's all I hear
You speak softly to my soul
You are my strong tower
Shelter over me
Beautiful and mighty
Everlasting King
You are my strong tower
Fortress when I'm weak
Your name is true and holy
And your face is all I seek
Connor is having a great summer, so far. We're trying to make up for last summer when he was in the hospital so much. He's been enjoying Vacation Bible School, Baseball Camp and Swimming Lessons. (I'll put some pictures of these activities on the website soon). He is so thrilled to be able to spend time in the swimming pool and actually learn to swim. Last summer was such a bummer, because he couldn't get completely in the pool. It was quite depressing. He would go inside and play while the other kids stayed outside to swim. We really didn't get in the pool much last summer, because it was so frustrating for Connor. The first time he swam in the pool this summer, Connor threw his hands above his head and said, "This is AWESOME!" Tait and I had to wipe the tears away. We realized how much Connor missed last summer and we are so thrilled that he is having a "normal" summer this year. He is loving life.
The Chip Moody Golf Tournament is Monday and the Silent Auction Fund Raiser is Saturday. These events raise money for Children's Medical Center in Dallas. Connor will have his Lemonade Stand at the Golf Tournament and he is going to "kick off" the Live Auction at the Fund Raiser. This money goes specifically to families that are being treated at the hospital and do not have the financial means to take care of their children's special needs. We hope the events go well and they raise a lot of money to help these families. Tait and I know how blessed we feel to have the support of so many friends and family members. We hope that the money raised can help make this difficult time easier for these families.
Thank you for your prayers for Macy. Her heart surgery went well and she is still recovering in the hospital. Please pray for Jacob's family. He passed away on the 12th. His family is grieving, but they are getting comfort from the knowledge that Jacob is in Heaven now. His Celebration Service was today. http://www.caringbridge.org/fl/jacob. Ryan Hall needs your continued prayers, because he is still on the breathing machine. The doctors are baffled with his illness. They think a "super virus" attacked his lungs and now he can't breathe on his own. Please pray that God would heal his lungs.
"May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit."
Romans 15:13
Thanks for your prayers and support.
In Christ,
Joy
Thursday, June 8, 2006 10:01 PM CDT
We are back from Boston. First of all, thank you to the McAvoy family. We stayed with them while we were in Boston, and they were great. They provided rides all over Boston, entertainment for Connor, and a great time while we were there. Instead of the whole trip being about hospitals and doctors, it was about spending time with new friends. Thank you so much for your hospitality and generosity. We loved spending time with you. Soon, we'll have pics of the McAvoy family with Connor on the website.
I feel like the trip was productive. We have tentatively scheduled Connor's surgery for July 13. The surgeon there felt like he could do the surgery. He deals with neuroblastoma tumors a lot and he is confident working in these "expensive real estate" areas. When we got back to the Cancer Clinic today, we were waiting for an opinion from another surgeon at Children's Medical Center. He said that he wouldn't touch any of the tumors. So, we have one surgeon who feels like he can remove them all, one surgeon who would remove only the two small tumors in the chest and one surgeon who would not touch any of them. Talk about differing opinions!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
As you can see, Tait and I did not get our CLEAR ANSWER that we were hoping for.
The surgeon in Boston is supposed to speak with Connor's doctor in Dallas, and maybe the surgeon can make Connor's doctor feel more comfortable with the surgery. At this point, Connor's doctor agrees with the two surgeons in Dallas. He feels like the surgery is too high risk. I have been warned that some surgeons like to do surgery because it is a challenge, not because it is the best thing for the patient. The patient could end up with long term side effects or could even die. I did not get the feeling that Dr. Shamberger in Boston was that kind of surgeon. I've received the opinion of several people that Dr. Shamberger is very good at predicting the risks and weighing them. According to Dr. Shamberger, he operates in these high risk areas all the time, so he is very confident about Connor's surgery. Of course, the surgeons here think that he's taking way too many risks with Connor. I don't know what the truth is. I'm asking a surgeon in Dallas who knows Dr. Shamberger to speak with him about the risks of the surgery and then get back with me about his opinion. I'm praying that there will be some clear direction soon. PLEASE PRAY FOR THAT CLEAR DIRECTION OR PEACE ABOUT WHAT DECISION WE SHOULD MAKE FOR CONNOR.
"Ask and it will be given to you; seek and you will find it; knock and the door will be opened to you." Matthew 7:7
"I am the Lord your God, who teaches you what is best for you, who directs you in the way you should go." Isaiah 48:17
Next Thursday, Connor will have a bone marrow biopsy to see if the cancer has come back in his bone marrow. This is just standard procedure. PLEASE PRAY THAT THE CANCER IS STILL GONE. If the cancer is back, there is not a cure YET. I know that they are working on a cure for relapse with some experimental treatments (like the antibody therapy I mentioned a couple weeks ago), but nothing is proven yet. PRAY THAT TAIT AND I CAN STAND STRONG IN OUR FAITH AND NOT FEAR THE OUTCOME OF THIS TEST. We are focusing on God and His Word (The Voice of Truth), and we believe that Connor is healed.
"I have set the Lord continually before me; because He is at my right hand, I will not be shaken." Psalm 16:8
"Seek the Lord and His strength, Seek His face continually. Remember His wonders which He has done, His marvels and the judgements uttered by His mouth." Psalm 105:4&5
"With men it is impossible, but not with God; for with God all things are possible." Mark 10:27
"For by these He has granted to us His precious and magnificent promises, so that by them you may be partakers of the divine nature" 2 Peter 1:4
"For every child of God defeats this evil world by trusting Christ to give the victory." John 5:4
Thank you for continued prayers and support. Please pray for Ryan Hall and Jacob (www.caringbridge.org/fl/jacob. They have both been in ICU on a ventilator to help them breathe for awhile now. Please pray that God would heal their lungs so they would be able to breathe on their own. Also, please pray for Bronson Balzac (www.caringbridg.org/visit/bronsonbalzac) who was recently diagnosed with neuroblastoma. Finally, please pray for Macy (www.caringbridge.org/visit/macy). She is a baby who is a few months old and she will have heart surgery next Friday.
In Christ,
Joy
Sunday, May 28, 2006 9:34 AM CDT
I wanted to write a quick note to ask everyone to PRAY FOR A SAFE TRIP TO BOSTON TOMORROW. ALSO, PLEASE PRAY THAT THE DOCTORS/SURGEONS THERE WILL GIVE US WISE ADVICE. I PRAY THE DIRECTION THEY GIVE US WILL BE THE DIRECTION GOD WANTS US TO TAKE. We get back from Boston Wednesday, and then I'll have an appointment with Connor's doctors here on Thursday. I'll update the website Thursday evening to update everyone. Thanks for your faithful prayers.
JOY
Connor is finished with radiation. Yeah! That seemed to go by very quickly. Dr. Bastasch said he was a STAR patient. He sat very still during the treatment, he had almost no side effects and he was always "so cheerful."
I think the patients in the waiting room are going to miss Connor. Before he came, the room was so QUIET and SERIOUS. Connor was like a breath of fresh air. He came into the room laughing and he left the room laughing. Connor can create fun anywhere he is (that's what children do). We played all kinds of games in the waiting room, like spy games and "gotcha," and we would race to and from the radiation room. I think Connor offered them a distraction from their thoughts and worries. Several times, I tried to quiet Connor down, but they would all say, "No, we like to hear his laughter in here." I wish them all the best...Miss Marcy, Charlie, Edmundo, etc...
We met with one of Connor's doctors at the Cancer Clinic on Thursday. We went over Connor's different options for surgery and the antibody therapy. His concern with the surgery is that the primary tumor may be wrapped around the vena cava. If it is, it will be very hard to remove that part. That is why Dr. Shamberger in Boston wants to run more tests to see if he can see the vena cava better. PLEASE PRAY THAT THE TUMOR IS NOT WRAPPED AROUND THE VENA CAVA.
He also mentioned again that we cannot be sure whether or not the tumors are dead. We may do another bone marrow biopsy to make sure his marrow is still clean and we could do a tumor biopsy. We're waiting to see what the surgeon in Boston recommends. The tumor biopsy is not 100ccurate. It is only taking out a section of the tumor, which would not give us the "whole picture."
He also said, that if he had to guess if the tumor was dead or alive, he may have to guess that it is still alive based on the fact that it has not shrunk. I said what about the other doctors who feel like the tumor is dead based on the fact that it's not shrinking or "dying" anymore. He said it's all a matter of "is the glass half empty or is it half full?" You could view the fact that it is not shrinking as if it is not responding to the treatment or you could view it as if the tumor were dead. He said that he tends to be a pessimist, which leads him to the glass is half empty scenario. My response is if the cancer is not responding to treatment, how did his bone marrow become clean and how did his bones become clean of cancer???? That is the reasoning that the other doctors used. If the bone marrow and bones are responding to treatment, than the tumors are also responding.
My initial reaction to his words was FEAR. But, as I continued to think about it, I focused on God's Word (the Voice of Truth), and I realized that God's opinion is the only one that matters. How many times have I gotten a wrong guess from a doctor. Five years ago, I was told that I had a 95hance of having Lymphoma. That doctor was wrong. It was only a cyst. During transplant, one doctor told us that the tumor may have gotten bigger. Than information was wrong. God has taken care of us during this whole journey. Why would he forsake us now???? I do not need to fear any doctor's words or guesses.
"Never will I leave you, never will I forsake you." Hebrews 13:56
"Thou wilt keep him in perfect peace, whose mind is stayed on Thee; because he trusted in Thee." Isaiah 26:3
On another note, I'm so humbled by the number of people praying for Connor. I receive letters in the mail from churches in the Dallas area, like the Heights Baptist Church, who continue to pray for Connor every week. I also receive letters from churhes across Texas and the US, like the First Baptish Church in West Columbia, Texas who continue to pray for Connor every week. I meet people at our church, restaurants, bookstores, my gym, etc. who tell me they've been praying for Connor, too. I don't even know these people, but they've been faithfully praying for Connor for months. I love it that several parents have told me that their children always remember to pray for Connor at bedtime or at meal time. They ALWAYS remember and they love praying for another child to get well. All of you, who keep track of Connor on the website, are praying for him, also. WOW!!! I'm so amazed at the faithfulness of everyone. When I think of all the people praying for Connor, I think of this song by Casting Crowns, "What If His People Prayed."
"What if His people prayed
And all who bare His name
Would humbly seek His face
And turn from their own way
He said that they would hear
His promise has been made
He'll answer loud and clear
If only we would pray
If My people called by My name
If they'll humble themselves and pray..."
Tait and I know what happens when God's people pray. We see miracles all along the way. We see our family being taken care of during this dark time. We see our son wrapped in God's Loving Arms. We see Connor taken care of during this long journey (he's dodged so many situations that could have been SO MUCH WORSE). We see sunlight thru the rain. We can honestly say that we have seen so many blessings happen during this trial. I also believe that because God's people prayed for Connor, we see a 5 year old boy who has been healed of cancer.
"Devote yourselves to prayer, keeping alert in it, with an attitude of thanksgiving." Colossians 4:2
We humbly thank all of you,
Joy
Friday, May 19, 2006 11:07 AM CDT
Well, it's been over a year - May 15, 2005 - when the world changed for my family, for Connor, and for all of our friends who are reading this. I'll never forget on May 15, 2005 when a client of mine, Dr. Okada, came in with a simple napkin like we all handle every day at a hamburger restaurant like Chile's, with the word "neuroblastoma" written on it. I will never look at a simple napkin the same again. While looking at that napkin with "neuroblastoma" written on it, our world changed forever. We had a new normal. The requirements for keeping our family together, for our faith to grow stronger, and meeting many of you, our new friends and supporters, and strengthening other relationships, meant our asking for help.
So many of you who follow this website, who have prayed for us diligently, who have fed us continuously both at home and through 109 nights at the hospital, 6 chemo treatments, 2 bone marrow treatments, 18 rounds of radiation, 5 surgeries, over 200 visits to the clinic, over 20 blood transfusions and 15 platelet transfusions, you have walked arm-in-arm with us. We thank you from the bottom of our hearts for the gifts, cards, food, prayers, support, babysitting, and love - but most of all your prayers.
One of my favorite verses in the Bible is 2 Samuel 7:18, where King David comes in and says Who am I, O Lord, and why have you brought my family this far? That's the way we feel today, 369 days later. We have seen the hand of the Lord in every step and our prayer all along is that God is glorified, that we remain strong and faithful to our walk in Christ, and that we can help other families experiencing the same thing.
We send a simple thank you from my family for your prayerful support and everything else you have done. We will never look at life the same way again where the house is dirty, clothes need to be washed, kids are busy, we're busy - I'll never look at the simple life again that we call BC, "before cancer."
I ask all of you to be grateful for your children's health, because children are a gift from God. When you walk in your house tonight, thank God that you have healthy children and that life is good because life, too, is a gift from our almighty God.
Thank you for your support. I can't say that enough. As we have walked this dark valley, you have been partners with us on all sides. The prayers of friends like you and the presence of our loving God above have sustained us every step of the way.
The report about Connor's CT scan last Friday when they checked to see if the tumor had shrunk showed it hasn't shrunk, but that was expected. They told us that scar tissue and dead tumors DON'T shrink. This further confirms that the tumor is dead!
Please pray for guidance for us. Joy and Connor are flying to Boston next month to consult with the Doctor there who has had success in removing neuroblastoma tumors. We pray he'll have some encouraging words for us.
Again, thank you from the bottom of my heart. I appreciate each and every one of you. We love you all.
Tait and Family
Friday, May 12, 2006 4:10 PM CDT
Thanks for checking in on Connor. He's feeling pretty good, considering he's had seven radiation treatments. He has had only minimal side effects so far. He has had some nausea and a little vomiting, but nothing like the side effects from the chemo. They did a cat scan at the radiation clinic today to check his abdominal tumor to see if it has shrunk any and to check on his kidney. PLEASE PRAY THAT HIS KIDNEY LOOKS GOOD AND THAT THE TUMOR IS SHRINKING. It will be easier for the surgeon to take the tumor out if it is smaller.
Also, Connor's Radiation Oncologist said Connor gets the gold star for being his star patient. He is doing so well at staying still on the radiation table. Everyone is so nice there, too. They all take turns holding Mason and helping me corral Carson while Connor is getting his radiation.
As for the surgeon, he has not seen Connor's cat scan yet. The "tumor board" meets every Tuesday, and Dr. Shamberger was called out of the meeting for an emergency surgery. We were hoping they would look at it next week, but most of the doctors will be out of town for a medical convention, so next week's meeting is cancelled. It may be the following week before they will look at Connor's cat scan.
Connor's doctor at Children's Medical Center mentioned another option for the surgery. If the surgeon cannot get the whole primary tumor out, then they could resect most of it and then radiate what is left. They can also place some radiation beads in the left over tumor. The beads should take care of what is left behind. They use the radiation beads often in prostate cancer. PRAY FOR WISDOM FOR THE SURGEON AS HE IS MAKING HIS RECOMMENDATIO.
A fellow neuroblastoma mom, Ann Podeswa, brought to my attention some new treatments doctors are using on neuroblastoma patients. Doctors at Memorial Sloan-Kettering in New York are working on several different types of immunotherapy, one of which includes the glyconutrients that Connor has been taking since he was first diagnosed. Very Interesting!! There is also another treatment using a monoclonal antibody called 3F8. They inject this 3F8 anitbody in Connor's blood stream. The antibody then attaches to the neuroblastoma cells. The antibody sends a "red flag" signal to Connor's immune system. Connor's own white cells should then start attacking any left over neuroblastoma cells. Eventually, Connor's body will start making the antibody on its own. When that happens, Connor will be finished with that treatment.
Immunotherapy is so interesting to me. Studying ways to make our bodies attack the cancer on its own would be so much better than using chemo or radiation to kill the cancer. Because Connor's body did not recognize the cancer as "foreign" or "bad," his white cells did not attack it, thus it was allowed to grow. The 3F8 antibody would teach Connor's body to recognize the neuroblastoma cancer cells and then attack it with his own white cells. This could potentially keep these kids in remission from relapsing. Who knows?? It is still in early stages of research, but it has very little side effects. So, I'm definitely interested in researching this. Connor's Dr. Aquino is communicating with Sloan Kettering's Dr. Kushner. We are keeping our options open.
I'm not sure Connor would be able to do the 3F8 antibody unless his tumors were resected, so the advice from the surgeon, Dr. Shamberger, is even more important now. I'm not sure if Connor qualifies for the treatment if he has no live neuroblastoma cells, either.????? We still have lots of questions. We have sent Connor's clinical summary to Dr. Kushner and he will make his recommendations. Connor's Dr. Aquino is looking into bringing the 3F8 antibody to Dallas. That would be great. Then I would not have to go to New York for the treatments, which would last 2 weeks each time. I'll update you on all these issues as soon as I get more info.
PLEASE PRAY FOR WISDOM AS TAIT AND I TRY TO MAKE THE BEST DECISIONS FOR CONNOR'S TREATMENT.
Also, thanks for your prayers for James. He is doing well, recovering from his brain surgery. Initially, he was supposed to come home today, but he may have to stay a little longer. Pray that he will heal quickly. Thanks again!!
I almost forgot. Connor hit Day 100 post transplant today, which means no more mask in public. We've been celebrating all day. He's having a great time in school and he's so glad to be back. I'm glad he got to return to school for the last few weeks.
I've over-loaded you with so much technical information, so I'll just leave you with a couple verses about God meeting all our needs and trusting Him to take care of everything...
"And my God will meet all your needs according to His glorious riches in Christ Jesus." Phillipians 4:19
"Trust in the Lord with all your heart and do not lean on your own understanding, in all your ways acknowledge Him and He will make your paths straight." Proverbs 3:5-6
In Christ,
Joy
Thursday, May 4, 2006 5:08 PM CDT
The first day of radiation went well. Connor is doing so well during the treatments. He has to lay completely still for about 10-15 minutes during the radiation and he is doing a great job. I am so glad he can lie still for that long. If he couldn't do it, they would have to put him under anesthesia while he was getting radiation. We would also have to be at the clinic around 7 am, driving with rush hour traffic. PLEASE PRAY THAT THE RADIATION KILLS ANY CANCER THAT IS STILL ALIVE, WITH MINIMUM SIDE EFFECTS.
Connor likes going to the radiation clinic. He thinks it is cool that the machine "zaps" his tummy bug. We pretend it is like a laser gun from Star Wars. He likes Dr. Bustasch and the nurses/techs there. He's already made friends with them all. He showed them his temporary stick-on tattoos and two of the nurses showed him their tattoos. What fun!! Mason even got to flirt with the nurses there today. They don't see many kids in the radiation clinic, so they pay special attention to Connor. Of course, Connor just loves the attention. It makes this part of the treatment a lot easier for Connor than the rest.
PLEASE PRAY FOR WISDOM FOR THE DOCTORS AND FOR US TO MAKE THE BEST DECISION FOR CONNOR'S FUTURE TREATMENT, THE SURGERY TO BE SPECIFIC.
Last week, the plan was to radiate all three tumors and not to resect any of them. As long as they were being radiated, the doctors felt that it was okay to leave them in Connor. Yesterday, the radiation doctor said that after looking at Connor's cat scan that they did last Thursday, he felt it was too risky to radiate the tumors by the aorta and spine. He was afraid of the damage it would do to the heart. So, now Connor is not getting radiation on the two smaller tumors.
Now, the question is do we resect the two small tumors if we can't get all three out. Initially, they felt like it wasn't worth it to take only some of them out. But, that was when they thought that all three tumors would be radiated. Now, we may remove the two small tumors after radiation. ?????
We have sent Connor's cat scan to a surgeon at Children's Medical Center- Boston. Dr. Shamberger has been very successful at tumor removal for neuroblastoma patients. He has a board of doctors meet and look over different cases every Tuesday. There is a radiation doctor, an oncology doctor, a surgeon, etc. on the board. I think it will be very beneficial to see what their opinion is. Dr. Shamberger came highly recommended to me by two different people. One person was a cardio-thorasic surgeon in Dallas and the other was a parent of another neuroblastoma patient. Dr. Shamberger actually did remove their son's tumors. Thank you to both Dr. Bowman and the McCreesh family for their recommendation and help with contacting Dr. Shamberger.
Thank you everyone who has been praying for Connor and helping our family for the past several months. I can't believe it, but we are coming up on Connor's one year anniversary of his diagnosis - May 15. It seems like we've come a long way. Throughout this ordeal, the one thing I can say for certain is that GOD IS FAITHFUL - HE HAS ALWAYS BEEN THERE FOR US! It has been incredible to see how he has worked in our lives and how he has taken such great care of Connor. Tait and I often say that we have a front row seat to watch God weave his miracles in and out of our lives. What an Awesome God we have! I'm so thankful that He is always there for us.
I'm going to quote "Casting Crowns" again. Christian music has always been a powerful source of inspiration, encouragement and healing for me, I guess that is why I quote songs so often. Anyway, "I Will Praise You In This Storm" really speaks to me about the faithfulness of God. Because of his faithfulness, I know I can praise him in our storm.
"I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can't find You
As the thunder rolls
I barely hear you whisper through the rain
"I'm with you"
And as your mercy falls
I raise my hands and praise the God who gives
And takes away (takes away Connor's cancer)
I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth.
"I lift up my eyes to the hills - where does my help come from? My help comes from the Lord, the Maker of heaven and earth." Psalm 121:1-2
PLEASE PRAY FOR OUR TWO YEAR OLD FRIEND, JAMES MORRISON. HE IS HAVING BRAIN SURGERY NEXT TUESDAY, MAY 9. I KNOW HIS FAMILY WOULD APPRECIATE YOUR PRAYERS.
Thanks,
Joy Cruse
Thursday, April 27, 2006 9:37 PM CDT
We went to the clinic today to check Connor's blood counts. They were very good. Connor hasn't been to the hospital in 2 weeks. He has enjoyed his time off. After the clinic, we went to the Radiation Center to get a cat scan and map out his body/tumors for radiation. Dr. Bastasch seems like a great doctor. We will be seeing a lot of him in the next few weeks. We will start radiation next week.
The main side effects from the radiation will be some damage to the right kidney, but the rest of the kidney should still function normally. He will also be 1 to 2 inches shorter in the torso area. He may also have some damage to blood vessels around the aorta. These are all locations where the tumors are located and where he will be receiving radiation. PLEASE PRAY FOR MINIMAL SIDE EFFECTS AND PRAY FOR THE RADIATION TO KILL ANY LIVE CANCER CELL.
As for the MIBG scan, when I explained the final report last week, I was inaccurate with my explanation. The dye they injected in Connor does not light up healthy cells. It lights up any abnormal/cancer cell, whether it is dead or alive. It does not differentiate whether the cell is dead or not. It only tells you that the cell is abnormal/cancerous. When the cells are alive, the dye will be really dark or there will be a lot of "uptake" of the dye. It was very good news that there was little "uptake" of the dye, suggestiing dead cancer cells. Connor's doctors said it would have been a better diagnostic tool if we could have compared it to an earlier scan (which would have had a lot of uptake). But, their best guess is that the tumors are dead. The radiation will make sure of that.
Another comment the Radiation Doctor made was that Connor has not had any treatment for 3 months and the cancer is not growing or showing up in new places. That is very good news, because this cancer is very aggressive and often times it is already growing again at this point. PRAISE GOD!!!
Thank you all for your prayers.
Last Friday, Connor was in the Children's Cancer Fund Fashion Show & Luncheon. It was wonderful, fantastic, mesmorizing, and beautiful.
The show began with a video of the past participants who had passed away in the last year. I knew a couple of the children and I did not know that they had passed away. It was a beautiful tribute to their fighting spirit and remarkable lives.
Next, the cancer survivors who had been in the fashion show in previous years came on stage. I can't tell you what it meant to me to see all those beautiful faces walking down the runway. I just sat there and visualized Connor being part of that group, celebrating life and victory!!! I can't wait for that day.
Then, they had the children model the clothing from Dillards. This is the part of the show that Connor was a part of. It was so adorable to see all of these childen "shine." There is no other word for it. Instead of being poked or prodded, instead of being stared at because they look different, everyone in the audience was watching these children with eyes of amazement and pride. We were amazed at their beautiful spirt and proud of them for their love of life, for their enjoyment of every second and for their determination and fight! It was such a beautiful experience. I wish you all could have been there.
Every child gets to walk down the isle with a sponsor, like Roger Staubach, Drew Pearson, the Tooth Fairy and some news broadcasters, etc.. Connor had the honor of walking down the runway with my sweet friend Lynn Stroud. She is a volunteer at Children's Medical Center in the Center for Cancer and Blood Disorders, or as we call it, the CLINIC. We met Lynn on one of our visits to the clinic. She has a daughter, Jennifer, who was diagnosed with Leukemia when she was a child and she lost her battle with the disease when she was seven. As Lynn says, Jennifer is her "little treasure in heaven." Since then, Lynn has spent many hours volunteering in the hospital and she and her husband are one of the sponsors for the Fashion Show and they provide breakfast for the families of the Fashion Show models. She and Connor were on the news together Friday night on Channel 4. The last shot of them, before the picture faded away, was of Lynn holding Connor's hand up in the air, as if to say we will conquer this cancer! We will survive and be victorious! It was so great!
It reminds me of this verse from Romans...
"We are more than conquerors through Him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation wil be able to separate us from the love of God that is in Christ Jesus." Romans 8:37-39
Thanks again,
Joy
Thursday, April 20, 2006 4:13 PM CDT
Well, I finally have a report to give. Dr. Aquino went over the final report of the MIBG scan with me today. Basically, the test did not give us any new information. There was a small amount of "uptake" of the dye shown on the scan, but that could easily be healthy cells that lit up. This scan showed the same thing that the CAT scan showed - no new spots of cancer and the old tumors have not grown. This is very good news. This cancer grows quickly and Connor has been without any treatment for 3 months. It is great news that there is no new evidence of cancer. I'm hanging on to that information, since there is no new information. Dr. Aquino said there is no way of knowing whether or not the cancer is alive unless they cut the tumors out, which is not possible for Connor because of the location of the tumors. He said the MIBG scan would have been a better diagnostic tool if we had had a previous scan to compare it to - a scan done before the chemotherapy began. The MIBG scan is new to Children's Medical Center, so we could not do the scan before Connor's treatment began.
To me, this is just another test of our FAITH. Although we have no tangible way of knowing whether or not the cancer is completely dead right now, we choose to believe that it is. We believe that God has healed Connor. We will not have concrete evidence to know if Connor is totally cured until he is 5 years post transplant. We choose to believe that he is cured, even if we won't see it with our eyes for years to come.
"Now faith is being sure of what we hope for and certain of what we do not see." Hebrews 11:1
I love that verse!!!!!!
Connor will start radiation on May 1 and he will have approximately 18 treatments. The surgeon decided it is best not to operate on Connor. If he cannot get all the cancer out, then there is no need to open him up to only get some of it out. Connor will get radiation on all the tumors. PRAY FOR PRECISE RADIATION! PRAY THAT THE RADIATION WILL KILL ANY CANCER CELL THAT IS STILL ALIVE.
Connor will be in the Children's Cancer Fund Fashion Show & Luncheon tommorrow. There will be approximately 25 kids from Children's Medical Center in the Fashion Show. Roger Staubach and Troy Aikman are the Co-Chairs and there will be other celebrities there. I guess we will find out tomorrow if Connor has any fashion sense. Also, Connor can go back to school next week (wearing his mask, of course). He's feeling so great and he is so ready to go back to school and enjoy the last few weeks. I hope his school is ready for him! Ready or not, here he COMES.
On another note, our friend, Rick Gershon (who took the great pictures of Connor that are currently on the website slideshow) and the Dallas Morning News won a Pullitzer Prize for Photography! Great Job, DMN!
Thank you for all your prayers and support. It definitely helps us through these long waiting periods. PLEASE PRAY FOR OUR CONTINUED HOPE, JOY AND PEACE.
"May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit."
Romans 15:13
In Christ,
Joy Cruse
Monday, April 17, 2006 10:03 PM CDT
We are still waiting on the MIBG scan report, but we should know something mid-week. The radiologists in Nuclear Medicine have to read the scan and then write a report, which they will then send to Connor's doctors. At that point, the doctors will give the information to us. As soon as we hear something, we will let you know. Thank you so much for your prayers and support.
"Do not be anxious about anything, but in everything by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Phillipians 4:6-7
For those of you who live in the DFW metroplex, check out "Good Morning Texas" on Channel 8 this Wednesday morning at 9:00 am. Connor will be on the show with some other children from Children's Medical Center. The TV show is going to talk about the 18th Annual Beyond the Rainbow Luncheon & Fashion Show that is taking place this Friday in Dallas. The Luncheon raises money for The Children's Cancer Fund. Connor is in the Fashion Show with these other children and they were asked to be on the show to give a sample of what the Fashion Show will be like. It should be really cute! On the show, don't look for a shiny bald head anymore or you'll miss Connor. He's growing some HAIR!
In Christ,
JOY
Saturday, April 16, 2006 1:35 PM CDT
Sorry I have not updated the website, but we do not have the results back from the scan yet. I was hoping we would have them Friday, so I waited to see if we would have the results. Hopefully, we will find out Monday. Thanks for your prayers and Happy Easter!!!
Thursday, April 6 2006
I'm writing my journal entry from sunny Lake Las Vegas today. Tait and I are at a business conference and I'm enjoying some much needed R&R.
My mom and Aunt Cody are watching the kids and they are having an uneventful week. Yeah! They have had no trips to the hospital, no scans, no transfusions and no blood tests. Connor is enjoying some normalcy. Cousin Lexie took the kids to see the movie "Ice Age 2," and our friends, Nikki and Denise, took the boys to see "The Wild." Connor is enjoying swimming in the hot tub (something he has not been able to do in a year)and he is now off of his special low bacteria diet and his "no restaurant" diet. Yeah! Connor has also had a couple play dates with his friends, Sayers and Mollie Claire.
Next Thursday, Connor will have his MIBG scan. PLEASE PRAY THAT THE CANCER IS DEAD! The following week, Tait and I will meet with the radiation doctor and he will be going over the specifics of Connor's radiation treatment. He will also discuss the negative side effects of radiation. We will also receive a more concrete schedule for the next six weeks.
Throughout this journey, there are times when our family can get overwhelmed, afraid and worried. It is so easy to focus on all the fear that is involved with this disease called cancer. Tait and I constantly have to remember to focus on the TRUTH (God's Word), instead of fear.
The story of David and Goliath is a great example of trusting in the Lord, instead of trusting in our fears. I often tell Connor that he reminds me of David. He is a young boy facing his own giant called cancer. Just as God helped David conquer Goliath, He will help Connor conquer cancer. I know it would have been easy for David to focus on his fear when he faced Goliath, but he chose to believe God's promises. God promised that He would protect David and give him victory.
David told Goliath, "You come to me with a sword, with a spear, and with a javelin. But I come to you in the name of the Lord of hosts, the God of the armies of Israel, whom you have defied. This day the Lord will deliver you into my hand." I Samuel 17:45
Those are not words of fear. They are words of faith. Just like David, we will listen and believe the voice of truth. Listen to these words from the musical group Casting Crowns. They are speaking about David's faith.
"Oh what I would do to have the kind of strength that it takes to stand in front of a giant with a sling and a stone
Surrounded by the sound of a thousand warriors
shaking in their armor
wishing they would have had the strength to stand.
But the giant is calling out my name and he laughs at me
Reminding me of all the times I tried before and failed
The giant keeps on telling me time and time again,
'Boy, you'll never win. You'll never win.'
But the voice of truth tells me a different story
The voice of truth says DO NOT BE AFRAID
And the voice of truth says THIS IS FOR MY GLORY
Out of all the voices calling out to me
I will choose to listen and believe the voice of truth.
I will choose to listen and believe, 'cause Jesus, you are the Voice of Truth."
In Christ,
Joy
Thursday, March 30, 2006 2:27 PM CST
We had a great day at clinic today! All of Connor's counts came up considerably. Praise God!!! Connor's doctors and nurses were right when they said last week that they thought he was turning the corner. His energy level is much better now and his white count is not in the dangerous range any more. He can fight off infection well now. His counts are doing so well that we don't even have to go to the clinic next week to get his labs done again.
We have an approximate schedule for the next few weeks. Connor will have that MIBG scan done on April 13. This scan will tell us if the cancer is still active in his tumors. PLEASE PRAY THE CANCER IS DEAD!!!!!
Assuming the cancer is dead, this is the plan. Connor will start radiation the last week of April. They will radiate the large tumor in the abdomen and a small lymph node that was affected in the chest. The surgeon feels that he cannot resect the large tumor in the abdomen. It covers a large area and is wrapped around several nerves and blood vessels. He may do more damage if he tries to take it out. The radiation should take care of that tumor. He does feel like he can resect the small tumor(s) in his chest. He will do that surgery after radiation.
PLEASE PRAY FOR WISDOM FOR THE SURGEONS AND DOCTORS. There is debate as to whether you should leave the tumors in or take them out. Also, should you radiate before or after surgery? Pray that the doctors make the best decision for Connor's overall treatment.
Thank you so much for all your prayers. We could not have gotten this far without all of you and your support, encouragement and prayers.
Through this whole experience Tait and I feel as though we have grown tremendously. My siser-in-law, Christie, says we have been given a gift. I think we see everything clearer now. We are no longer weighted down by all the frivolous worries in life. When Connor was first diagnosed, the doctors said our lives would be greatly simplified and our priorities would change. I hope that we have learned to focus on the important things, live life the way God intended us to, and appreciate every moment God has given us.
It reminds me of the song "We Live" by Superchick...
There is a man who waits for the tests
To see if the cancer has spread yet
And now he askes, "Why did I wait to live till it was time to die?"
If I could have the time back how I'd live
Life is such a gift
So How does the story end?
Well this is your story and it all depends
So don't let it become true
Get out and do what we are meant to do
We live, we love
We forgive and never give up
Cause the days we are given are gifts from above
Today we remember to live and to love.
Waking up to another dark morning
People are mourning
The weather in life outside is storming
But what would it take for the clouds to break
For us to realize each day is a gift somehow, someway
So get our heads up out of the darkness
And spark this new mindset and start to live life cause it ain't gone yet
And tragedy is a reminder to take off the blinders
And wake up and live the life were supposed to take up
Moving forward with all our heads up cause life is worth living
We live, we love
We forgive and never give up
Cause the days we are given are gifts from above
Today we remember to live and to love!
As Jesus tells us in John 10:10, "I have come that you may have LIFE and that you may have it more ABUNDANTLY."
I pray that we would all appreciate this miracle called "life" and that we would live it "abundantly."
In Christ,
JOY
Thursday, March 23, 2006 4:01 PM CST
Lots of information today!!!! I hope I can explain everything in a clear and concise manner.
I'll start off by telling you it is good news. Tait and I met with the doctor today and she went over the cat scan and bone scan with us. First of all, the bone scan was very good. From the beginning, the neuroblastoma was in Connor's bones, in several spots. The bone scan indicates whether or not the cancer is still active in his bones. According to the bone scan, the cancer is not active in the bones anymore. That cancer seems to be DEAD! PRAISE GOD!
The results of the cat scan are a little more complicated to explain. The tumors are still there and they have not changed in size from the last cat scan. According to the doctor, that is very common with neuroblastoma. In the beginning, it will shrink a little bit, but then it "matures" or dies, but doesn't shrink anymore. That is exactly what we saw with Connor's tumors. It did shrink in the beginning, but then it has stayed the same. Because the cancer in the bone is dead, they have reason to believe that the tumors may also be dead. The problem is the cat scan cannot tell us the status of the tumors. It is very good news that tumors did not grow and there are no new tumors. That would be the worst news. The doctors are very hopeful that the tumors are dead.
Now, we have to decide what the next step is. There are a few options. Our transplant doctor will discuss with the surgeon this afternoon whether or not they should remove the tumors. She explained that several of the small tumors are near "expensive real estate" in the body. For example, one is near the aorta. The surgeon will give us his opinion as to whether or not he can get all the tumors out. He may be able to get some of the tumors out, but not all of them. Also, he will hopefully be able to tell if the tumors' tenacles have released their hold on the vital organs.
The surgeon may need more information to make his decison. We may do a biopsy on his tumors to see if they are dead or still active. Instead of a biopsy, we may do a MIBG scan. For this scan, they would inject a dye into Connor and any active cancer cell will light up. Based on the added information, the surgeon would decide if they should remove the tumors or if they should leave them there and just radiate them. If the tumors are dead/benign, they may decide to leave them in Connor. Connor will then have radiation on those tumors. Connor will have radiation next month, even if all the tumors are removed. The radiation is insurance that the cancer does not come back.
As you can see, the information we received today was good, but we still have a lot of questions. Our doctor said she felt it was good news today. The only thing that would have made it better was if the tumors were smaller and easier to get to (or of course if they had disappeared, which wasn't very likely). My friend Kelli said it was like we received a 9 out of 10 rating. I will update the website again when I get new information about the surgeon's recommendations.
We also found out today that Connor's red and white blood counts are holding steady. His platelets continue to rise. Our doctors and nurses feel like this is the turning point for his blood counts. We hope that we are finished with blood and platelet transfusions and neupogin shots! PLEASE PRAY THAT HIS BONE MARROW IS WORKING FULLY NOW AND HIS COUNTS WILL CONTINUE TO RISE.
ALSO, PLEASE PRAY THAT THE CANCER IS DEAD! PRAY FOR WISDOM FOR THE SURGEONS AND DOCTORS AS THEY GUIDE US THROUGH THE NEXT STEPS. PRAISE GOD THAT THERE IS NO NEW CANCER GROWTH!
On a different note, Carson and Naz did a great job at St. Baldrick's Day. They shaved their heads in front of a restaurant full of people. Together, they raised about $3000 dollars to "CONQUER KIDS' CANCER." Thanks to both of the "shavees" and thanks to everyone who sponsored Carson and Naz. I will have pictures from this event on the website soon. I have a great picture of Connor and his Oncology Doctor, Dr. jenny Wright, who shaved her head also.
Thank you, Kelli and Mollie Claire, for waiting with us at the Cancer Clinic today. It was nice to have support and encouragement while we waited. Also, thank you Denise and Suzanne for watching Mason today. Thank you to everyone for all your prayers and words of encouragement! God definitely gave us "peace that passes all understanding" this week.
"Bless the Lord, O my soul; and all that is within me, bless His holy name! Who forgives all your iniquities, who heals all you diseases, who redeems your life from destruction, who crowns you with lovingkindness and tender mercies, who satisfies your mouth with good things, so that your youth is renewed like the eagle's." Psalm 103:1-5
"He perfroms wonders that cannot be fathomed, miracles that cannot be counted." Job 5:9
"You are from God, little children, and have overcome them; because greater is He who is in you that he who is in the world." 1 John 4:4
Thursday, March 16, 2006 6:57 PM CST
Another day at the clinic and more information to share!!!! Connor's platelets are doing well, but his white and red blood count have gone down. This pattern seems very similar to the last transplant. It just takes awhile for his bone marrow to start producing cells consistently. He will probably need a blood transfusion next week and I will be giving him a neupogin shot tonight to stimulate his white blood cell production. PLEASE PRAY THAT CONNOR'S
BONE MARROW WILL START WORKING CONSISTENTLY AND PRAY THAT HE DOES NOT GET SICK WHILE HIS WHITE COUNT IS LOW.
Next Wednesday will be his cat scan. The surgeons will then study the cat scan, and I will be meeting with Connor's doctors on Thursday to discuss the recommendations of the surgeons. PLEASE PRAY THAT THE LARGE TUMOR IN HIS ABDOMEN WILL BE EASY TO REMOVE AND THAT THE TENACLES HAVE RELEASED THEIR HOLD ON VITAL ORGANS. ALSO, PRAY THAT THE SMALL LEGIONS HAVE DISAPPEARED OR THAT THEY CAN BE EASILY REMOVED WITH THE LARGE TUMOR. PRAY, ABOVE ALL, THAT THE TUMOR(S) ARE COMPLETELY DEAD! I'm just turning this cat scan over to the Lord and I'm not going to worry about the results. PRAY FOR PEACE FOR TAIT AND ME.
"Thou wilt keep him in perfect peace, whose mind is stayed on Thee; because he trusted in Thee." Isaiah 26:3
"For if we are faithful to the end, trusting God just as firmly as when we first believed, we will share in all that belongs to Christ." Hebrews 3:14
Connor also had a hearing test today. Some of the chemotherapy drugs he has been given cause high pitch hearing loss. One chemotherapy drug he was given during transplant was given in such a high dosage that it almost always causes severe hearing loss. The audiologist said that Connor's high pitch hearing was severely reduced. She recommended that he get hearing aids. The transplant doctor said that most of the neuroblastoma kids have to get hearing aids after their tranplants. We will get a second opinion, but Connor will most likely get hearing aids in the next two months. This damage will be permanent. PLEASE PRAY THAT CONNOR WILL ADAPT WELL TO YET ANOTHER EXTREME LIFE CHANGE! I think Connor is getting a little bit overwhelmed with all the changes he has gone through.
On another note, remember to watch for Carson on the news Saturday evening. Their will be news broadcasters at the St. Baldrick's Day event. Thank you to everyone who has donated money to sponsor Carson and help fight childhood cancer. We really appreciate it. If anyone else is interested in sponsoring Carson or finding out more information, go to www.StBaldricks.org.
In Christ,
Joy
Thursday, March 9, 2006 4:02 PM CST
I'm Back! Sorry it took so long to update everyone, but we have been BUSY! It is Spring Break this week and we've been at Grandma and Grandpa's Ranch in Oklahoma. They don't own a computer, so I couldn't upate the website until I got home. We had a great time at the Vilhauer Ranch. We went fishing, had a wieinie roast, rode the gator and bulldozer, played basketball, and flew our new kite. We also went to our favorite store "Boy Howdy" and got a new toy. We also bought a lot of toys for the "prize closet" at the Cancer Clinic. I'm sure all the kids will love the new toys.
Last week, Connor's counts were all low. We spent all day at the clinic Thursday getting a platelet and blood transfusion. We also gave Connor a couple neupogin shots over the weekend to boost his white blood count. Today, his blood counts were much better. PLEASE CONTINUE TO PRAY THAT HIS BONE MARROW WILL CONTINUE TO PRODUCE RED/WHITE BLOOD CELLS AND PLATELETS.
Connor will have his cat scan in a couple weeks. This scan will determine our new road map. After the surgeons study the cat scan, they will decide whether or not Connor will have surgery. If the large tumor in his abdomen is in a location where it can be reached and the tenacles have released their hold on his organs, they will remove the tumor. PLEASE PRAY THAT THE SURGEONS CAN REMOVE THE TUMOR EASILY. We will not know if the tumor is dead until it is removed. PLEASE PRAY, ALSO, THAT THE TUMOR(S) ARE NOW DEAD/BENIGN. There were also some smaller tumors, which they called legions. PLEASE PRAY THAT THEY ARE GONE OR CAN BE EASILY REMOVED. If they are still present and cannot be removed, Tait and I will have to make a decision as to whether or not we radiate them. Connor will get radiation where his large tumor is and in one lymph node that was affected. We would really like the radiation to be as minimal as possible.
This cancer is very aggressive and it can easily come back. IF IT COMES BACK, THERE WILL BE NO MEDICAL CURE. That is why the doctors approach this cancer very aggressively with chemo, transplant, surgery, radiation and then Acutane for six months. We have to keep it from coming back. PRAY THAT THESE TREATMENTS WILL COMPLETELY REMOVE THE CANCER FROM HIS BODY FOREVER AND IT WILL NOT COME BACK!
"Affliction will not rise up a second time." Nahum 1:9
I'm claiming this verse for Connor.
I realize we have a lot of prayer requests, but I know God will meet all our needs.
"And my God will meet all your needs accordinig to his glorious riches in Christ Jesus." Phllipians 4:19
Carson is still going to shave his head on March 18 for St. Baldrick's Day. Our wonderful supporters have already donated $575. Thank you. St. Baldrick's Day is the world's biggest event for childhood cancer. It has been featured in many newspapers across the nation and several celebrities/professional athletes have supported the cause in the past. It has raised more than 12 million dollars since it began six years ago.
In the United States, forty-six children, or two classrooms of students, are diagnosed every day. Over the last twenty-five years, the incidence of childhood cancer has increased every year. Forty years ago, childhood cancer was almost always fatal. Today, through advancements in diagnosis and treatment, 77 percent of children with cancer can now be cured. Despite this remarkable progress in research and treatment, cancer remains the leading cause of death by disease in children.
The St. Baldrick's Foundation exists to raise awareness and funds to Conquer Kids's Cancer by shaving heads at St. Baldrick's events. To donate money to sponsor Carson or learn more, please visit www.StBaldricks.org.
Please pray for our friend Rajul. He is a five year old that also has neuroblastoma. The chemotherapy has not gotten rid of the cancer in his bone marrow. He cannot go any further in his treament until his bone marrow is clean. He is getting an experimental chemo this coming week. Please pray that it will completely clean his bone marrow. The doctors are running out of options for Rajul.
In Christ,
JOY
Tuesday, February 28, 2006 11:11 AM CST
We have enjoyed our first week at home. It was great to wake up Tuesday morning and not rush to the hospital. Connor has enjoyed spending time with Carson and Mason, whom he hasn't seen in a month. Connor could not have visitors younger than 6 in the Bone Marrow Transplant Unit, so he was only able to see his brothers through a window. He's been showering Mason with lots of big brother kisses and he's been wrestling and sword fighting with Carson. He's so happy to be home, he's even playing Polly Pockets with MacKenzie.
Connor loves having his central line out! He shows everyone his new port. Right now, all of his counts are low, so PLEASE PRAY THAT HIS NEW STEM CELLS WILL START WORKING AND PRODUCING NEW RED/WHITE BLOOD CELLS AND PLATELETS. Also, PLEASE PRAY THAT GOD WILL PROTECT HIM FROM INFECTIONS/VIRUS WHILE HIS COUNTS ARE LOW. PRAY THAT THE CHEMOTHERAPY KILLED ALL THE CANCER.
The next step is a cat scan in 2-3 weeks. Then, they will decide if he needs surgery or not. If he needs surgery, they will start the radiation a couple weeks after surgery. There will be approximately 20 radiation visits, which will take about a month. Lastly, he will take an oral medication (Acutane) for six months to keep the cancer from coming back. That is a rough outline of the next nine months. We are back on our special diet for 60 days and back to wearing our mask in public for 100 days post transplant. Connor may be able to go back to preschool for the last week or two.
Last night, Connor went to a Banquet for the Student Christian Athlete of the Year for the State of Texas. Tim Flores was being honored for the "Carl Lewis Inspiration Award." You may remember Tim, the football player who coordinated "Connor Cruse Night" at PCA. There are several pictures of Tim and Connor on Connor's website. Connor was glad to present Tim with his award. Carl Lewis also presented Tim with his award. CONGRATS TIMOTHY!
I have recently found out about St. Baldrick's day; a national fund raising day for children's cancer. On St. Patrick's Day, the "shavee" gets their head shaved to raise money. The "shavee" gets sponsors to donate money in their honor. Connor's brother, Carson, has "willingly" volunteered to shave his head for his Super Hero Brother, Connor. We are not going to call people and ask them to donate money, but if you are interested in sponsoring Carson, go to www.stbaldricks.org. There are several teams and shavees across the country. Another Neuroblastoma patient, Brent McCreesh, has a big team in Connecticut. His mom is the one who told me about St. Baldrick's Day. Also, one of Connor's Oncology Doctors, Dr. Wright, shaved her head last year and she's doing it again this year. We'll definitely provide pictures of this event. Please help us in the fight against Children's Cancer.
Please pray for Jonathon and Angie Spinks. Their son, Nathan, went to be with his Father in heaven last Monday. www3. caringbridge.org/tx/nathanspinks.
In Christ,
Joy Cruse
Saturday, February 18, 2006 9:14 PM CST
Dear Friends,
I have not posted in months because Joy is so good with the written word and explaing what is happening. Thank you for your interest. We've counted over 90 nites in the hospital, 20 plus tranfusions, 15 platelets, 8 big rounds of chemo, and 5 surgeries, 2 bone marrow transplants and over 100 visits to clinic. We as a family could not be as strong as we are without all of you praying. The food, gifts, the prayers, the errands, all of it has saved a family from the stresses of this horrible disease.
Nine Months ago almost to the day this started, and oh what I have learned so far..
1. God is in charge and we are in the stands watching. That is such a good feeling. It is not in our hands. It is all in our SOVEREIGN LORD'S HANDS. There is nothing we can do but pray and remain faithful.
2. Enjoy your children to the minute because they are on loan from God.
Dear Connor.
As you lay in that bed for another night (Day 27), it's hard to close the house down without you. Each time I kiss you good bye or goodnite, I whisper in your ear, "Fight Connor-fight for life." Remember the mornings with eggs cooking and the smell of Grandmas coffee. Connor, remember the feel of a fresh washed shirt, and the smell of mommys car on the way to school with the music on and everyone talking so loud. Connor, remember your school and the cool playground and all your friends there like Ann Renee. Connor, remember church and praying to God, with the taste of doughnuts in your mouth and the feel of a hug from your mom and me as we drop you off at your Sunday School class and you see your buddy, Mollie Claire. Remember the anticipation of waking up Christmas morning and running down the stairs with your siblings to see your Christmas presents. Connor, remember the smell of mexican food and the burn of a coke in your mouth, and naps with Daddy, and the feel of the fresh grass as we wrestle for hours. Connor, remember the "snap" of the plastic swords as we fight and attack each other's forts. Connor, remember Carson and his love of you and the hours of playing with him and secret attacks on Daddy. Remember hugs from Mommy, Grandma and Aunt Cody and tickle fights with Cousin Lexie. Connor, remember the feel of the hottub as it bubbles with the steam in your nose as we all sit in it before we go to Tin Star or the PurpleCow. Connor remember Mackenzie and all her fun, smiles and laughs as you two play, watch tv or go with what ever she wants. Remember Mason our sweet little baby and your fun Uncle Tom, Grandpa Burt, Lexie, Mitch, Trent, Kylie and Chasie Boo. Connor remember the hot summer sun, your bike, the yellow gator, the rides in the Landrover to Sonic, the fishing at our ranch, the big giraffe in our house, the rides in Grandpa's tractor looking for deer, the super fast car rides with all windows down in Daddy's car. Connor, remember life is good and fun like sitting in Grandpa's lap, listening to Daddys loud music, and visiting Uncle Rods business, Rodman Excavation, where you get to play on all the cool bulldozers. Connor, remember slurpees, and nachos, and cheese sticks and Mommy telling you to eat your veggies. Connor, remember family nites and adventures on your motorcycle with Brittney and Carson. Connor remember our wonderful house with snow on the roof and the feel of rain, and smell of spring and wind in your face. Connor, remember the sound of a basketball or the "slap" of a soccer ball and all those fun nites with Daddy at the Stars' games. Connor, remember your friend Cade next door playing hide n seek, and the feel of losing your breath as you run away. Connor remember movies, Spongebob Squarepants and baths with Carson . Connor don't look back and let time stand still. It's time to live and go forward and live to see the people that love you and your friends that surround you. Remember your dream to go back to DisneyWorld. Dream of the playing on the beach, hunting in Africa with Daddy and Grandpa. Dream of playing football and basketball, driving a car, and your first concert. Dream of being baptized and shooting your first deer, your first kiss, and the dizzy-wonderful feeling as your bride walks down the isle to marry you. Connor we are all ready for you to come home and be cancer free. Connor I love you, Daddy
Friday, February 17, 2006 1:44 PM CST
Day 26
Our stay at the hospital should be over by Monday or Tuesday of next week. Yeah!!!! Praise God!!!!! I can't believe the two transplants are almost complete. His white count is still doing well. His ANC was up to 2000 yesterday. They have been giving Connor medicine (neupogin) to increase the production of white cells. They stopped the medicine yesterday, so his ANC dropped back down to 800. This was expected. WE will wait and see if his bone marrow will continue working without the aid of neupogin. PLEASE PRAY HIS WHITE COUNTS CONTINUE TO RISE.
On Tuesday night, Tait had an eventful evening with Connor. The cap on one of the tubes from Connor's central line came off and Connor started bleeding out. He bled so much he needed a blood transfusion the next morning. Tait said it was a mess! Because the tube was not protected from germs as it set in his blood and on the sheets, they decided to take out his central line and put in a port. A port is located under Connor's skin and there will be no tubes hanging out of his body. Hallelujah!!
He has had a cenral line for 9 months almost to the day. This may not seem to be a big deal, but for those of us who have to deal with a central line ... this is great. Connor cannot get his tubes wet, so he cannot take a normal bath, he cannot swim, and he cannot take a shower. He has to be very careful with it, so he doesn't get it yanked out. Several times, it has caught on something and it is very painful for him and it bleeds at the incision site. It is also a perfect site for bacterial and fungal infections. Not to mention how this will be easier for me. I won't have to change his dressing 2 times a week (which he HATES) and I don't have to flush his lines every night. I feel like I'm giving up most of my nursing duties. Aahh Shucks! And I've become so good at it! haha.
I am so excited for Connor. He can take a bath and sit in the hot tub with Daddy without worrying about getting his tubes wet. I really took all that for granted before his central line. Anyway, it's funny how God took the bad situation (Connor bleeding out) and turned it into something good (he got his central line taken out).
"You intened it to harm me, but God intended it for good to accomplish what is now being done." Genesis 50:20
"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28
Please pray that Connor will start eating and taking his meds orally again. This is the one requirement he has before he can go home. He also needs to spend more time out of bed - his muscles have atrophied some and he needs to strengthen them. As always, thank you for your prayers and support. I don't know what we would do without all of you.
Please continue to pray for Nathan Spinks - he is home now, but he still needs God's healing power.
In Christ,
JOY
Sunday, February 12, 2006 3:42 PM CST
What a difference a day (or 2) can make!!! God is answering our prayers. Friday night at 9:00, Connor's fever broke, as MacKenzie, Carson and I prayed specifically about it. Also, our friends, Mackenzie and Mollie Claire were praying at the same time, too. His fever has not returned. Praise God!!!
Also, his ANC (part of his white blood count) rose to 99 on Saturday and 168 today. His bone marrow is definitely working now. It needs to reach 1000 for at least three days before we can go home. His ANC numbers should double everyday. PLEASE PRAY THAT HIS ANC CONTINUES TO RISE, SO WE CAN GO HOME.
His stomach is not bloated anymore, either. His albumin levels are almost normal now and most of his extra fluid is gone. His breathing/heart rate is not rapid anymore. It is back to normal. The extra fluid may have been the source of his increased heart rate.
More great news...The doctor came in this morning and said yesterdays blood culture showed no signs of a bacterial infection. Praise God again! GOD IS SO GOOD!
"I will praise you, O Lord, among the nations; I will sing of you among the peoples. For great is your love, reaching to the heavens; your faithfulness reaches to the skies." Psalm 57:9,10
The doctors feel that the source of the infection was not the central line, but issues due to the sloughing off of his intestinal lining. The mucositis in his intestines caused the lining to slough off. The e-coli bacteria in his intestines then leaked into his blood supply, causing the infection. The blood also leaked into the intestines, which is why there was blood in his stool. On Friday, Connor was stable, so they felt he was not in critical condition. If the infection got worse over the weekend, they would have put him in ICU. We feel very blessed that Connor did not get worse, but that his little body fought off the infection instead.
THANK YOU SO MUCH FOR YOUR FAITHFUL PRAYERS. Your constant prayers and support reminds me of Exodus 17:11-30.
"As long as Moses held up his hands, the Israelites were winning, but whenever he lowered his hands, the Amalekites were winning. When Moses' hands grew tired, they took a stone and put it under him and he sat on it. Aaron and Hur held his hands up- one on one side, one on the other- so that his hands remained steady till sunset. So Joshua overcame the Amalekite army with the sword."
Tait and I feel like Moses. We need to continually "hold up" God in our lives so Connor can focus on God and "overcome" the cancer. All of you are Aaron and Hur - helping us and supporting us so we can "hold up" God for Connor and others to see.
Our heartfelt thanks,
Joy & Tait
Thursday, February 9, 2006 8:34 AM CST
Friday, February 10
DAY 19
His blood culture from yesterday came back positive for a bacterial infection again. The doctors want to give his body some time to fight the infection before they take out the central line. It's hard to tell if the infection is from the central line or not, so they will wait and see what happens before they take it out.
His stomach is very bloated, so they checked his albumin levels. They are low, so they will give him albumin. This should help him get rid of all the extra fluid. Also, his breathing is rapid, so they checked his blood/oxygen levels. They are fine. He may be breathing rapidly due to the fever or high fluid level.
He is still vomiting and having severe diahrrea, due to...chemo?... antibiotics?...bacterial infection? Connor's Nurse Practitioner said all these symptoms are normal side effects of the chemo and this is not unexpected. I'm realizing now what an easy time we had with his last transplant.
The good news is that his white count has started to improve. The ANC (which is the part of the white blood count they watch closely) came up from 0 to 55. This is the count that needs to be over 1000 for a few days before he can be released from the hospital. The ANC count usually doubles everyday when the bone marrow has truly started working. This is also what we need to fight the infection.
PLEASE PRAY FOR HIS BACTERIAL INFECTION, FEVER, DIAHRREA, VOMITING AND RAPID BREATHING TO GO AWAY.
PLEASE PRAY HIS ANC (WHITE COUNT) CONTINUES TO RISE STEADILY.
Thursday, Feb. 9
Today is day 18. Time is flying. I hope it is for Connor, too. He's hanging in there. He does not have anymore abdominal pain. Thank you, God. They have lowered the morphine amount and hopefully they will be able to take him off of it tomorrow. They have kept him on it in case the mouth sores come. They saw a mouth sore on Tuesday, but didn't see it again yesterday.
He is on antibiotics because he has had a fever since Friday night. It comes and goes. It's mainly a low grade fever, but it has gotten as high as 104. It is common for kids to run a low grade fever until their white count comes back up. They are constantly testing him to see if he has any infections, viruses, etc. So far, everything has been negative. This morning one of his blood cultures came back positive for a bacterial infection. The infection could be in the central line. It is possible the antibiotics could kill the infection. If not, they may have to take the central line out. They would replace it with a PIC Line in his arm, like he had in July. They are taking another blood sample and we should have the results tomorrow. PLEASE PRAY THAT THIS SAMPLE COMES BACK NEGATIVE. The one plus side to the constant antibiotics is that they can keep the mouth sores from progressing. PLEASE PRAY THAT HIS FEVER GOES AWAY COMPLETELY AND THAT HIS BODY WILL FIGHT OFF WHATEVER IS MAKING HIS FEVER RISE.
He also has a cold and they are watching him to make sure the cold does not go into his lungs. Pneumonia would be really bad right now, because his white count is still low. It has started to show up a little bit (.1 and .2). It usually hovers there for a few days before it really starts working. PLEASE PRAY THAT THE COLD DOES NOT TURN INTO PNEUMONIA AND PRAY THAT HIS BONE MARROW STARTS WORKING - MAKING THOSE WHITE CELLS.
Overall, he's in good spirits. He enjoys playing with the new toys he's received, like the new swords from Daddy. That's all he needs...more swords! I think he has 8 at the hospital now. He has so many, he even gave one to the 2 year old, Seth, in the next room. He's had fun with his new King Kong from Miss Denise, the hotwheels, the crocodile pillow from his Sunday School class and the other numerous toys. He also enjoyed the cookie bouquet from Mollie Claire. His classmates at school sent him Valentine Cards, which his teacher, Mrs. King, brought to him Sunday. Thanks everyone for all your gifts.
On another note, I remember how many of you offered to donate blood or bone marrow for Connor. That was such a generous offer. Fortunately, Connor was able to use his own bone marrow and he didn't need a bone marrow donor. Unfortunately, there are many children here at Children's Medical Center who need a bone marrow donor and it can be hard to find a match. Little Elisha received bone marrow from a donor and his body rejected it because it was not a perfect match. There needs to be more bone marrow donors so they can find better matches for these kids. Many people are not aware of how easy it is to get on the National Bone Marrow Registry. All they need is a small finger prick amount of your blood and your name, address and phone number. If your bone marrow is a match for someone, they will then contact you and tell you the next step. Children's Medical Center is having a Bone Marrow Drive on Valentines Day from 8am to 4 pm. It will be on the First Floor, across from the Admissions Desk. You can call 214-351-8150 for more information. Please join me Tuesday and we'll be true "Match Makers" together.
"My son, forget not my law; but let thine heart keep my commandments: for length of days, and long life, and peace, shall they add to thee...My word shall be health to they navel, and marrow to thy bones." Proverbs 3:1-2, 8
Please continue to pray for Nathan Spinks and Mary.
In Christ,
JOY
Saturday, February 4, 2006 3:32 PM CST
Dear Friends,
Thank you for your prayers and thank you for praying for the other children who are sick here, also. Right now, I would like you to lift up my friend Mary in your prayers. Her five year old son, Elisha, went to be with the Lord today. Elisha was such a beautiful, sweet child who loved the Lord. His website is www.elishahenderson.com. He had such a fighting spirit. He has battled two diseases in his young life and he fought like a champion. I know that right now Elisha is dancing and singing praises to the Lord in His presence.
Mary has been such an inspiration to me. She has such an unselfish love for so many of the families here in the hospital. Her smiling face always brings joy to my heart every time I see her here in the hospital. She always demonstrates such great faith and love for Christ. Please pray for God's unfailing love, comfort, strength and peace for her right now.
"He heals the broken-hearted and binds up their wounds. He determines the number of the stars and calls them each by name. Great is the Lord and mighty in power; his understanding has no limit." Psalm 147:3-6
"Fear thou not, for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with my righteous right hand." Isaiah 41:10
"He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the Lord, He is my refuge and my fortress, my God, in whom I trust." Psalm 91:1&2
Connor is doing better now. They did a cat scan on Friday to find out why he's having abdominal pain. Everything looked good. The tumor has not grown and all his organs look fine. There were no signs of infection. Connor has diahrrea again and a lot of gas, but his abdominal pain is much better now. He's on a morphine drip now, so I'm not sure if he feels better because of the constant morphine or if his bowel problems are better. The pain may not be from mucositis.?? They may lower the morphine amount tomorrow to see if the pain is truly gone or if the morphine is masking it. He is also running a fever. They have started him on antibiotics and they are checking his blood for infections. Please pray that his fever goes away and that there is no infection. His white count is at 0 now, so he won't be able to fight off an infection until his counts come back up.
Please continue to pray for the specific prayer requests from last time.
"If two of you agree on anything that they ask, it will be done for them by My Father in heaven." Matthdew 18:19
Thanks
Joy
Thursday, February 2, 2006 2:49 PM CST
Today is day 11 of our stay here in the Bone Marrow Transplant Unit. Connor received his stem cells on Tuesday and Wednesday. Everything went fine with that. Now, we are just waiting for his bone marrow to start working.
Unfortunately, Connor has been experiencing severe abdominal pain for three days now. The nurses have been giving him tylenol with codeine and morphine to stop the pain. The doctors feel like it is the mucositis (the sores that go throughout the digestive tract.) He doesn't have sores in his mouth yet, but it can start in the digestive tract first. They did a sonogram to check his abdomen. Everything looked fine there, so they are pretty sure it is the mucositis. They did see that the large tumor in his abdomen is still there. It does not seem to have shrunk. PLEASE PRAY THAT, ALTHOUGH THE TUMOR IS STILL THERE, IT IS DEAD!
Connor will most likely be on pain medication until his white count starts coming up. The mucositis will not start healing until he has white blood cells to heal it. PLEASE PRAY THAT HIS WHITE COUNT STARTS COMING UP QUICKLY. Last time, it was about 10 days after transplant when he started making white blood cells. If his bone marrow starts working at the same time this transplant, we should see some white blood cells by next weekend.
He received his first blood and platelet transfusion today and he has stopped eating. They will put him on the TPN (nutrition through his central line) tonight.
Please pray for...
1. The tumors to die and/or disappear.
2. His bone marrow to start working quickly to produce white/red blood cells and platelets.
3. His mucositis to heal quickly (and not get any worse).
4. The nurses to be able to manage his pain with medication and Connor to be able to tolerate the pain.
5. No infections/viruses while his white count is at 0.
6. Strength and peace for the whole family...Connor, Tait, Joy, MacKenzie, Carson and Mason.
As always, thanks for all your prayers and support. Please continue to pray for Nathan Spinks (www3.caringbridge.org/tx/nathanspinks) and Elisha Henderson (www.elishahenderson.com). Elisha is not doing well. His kidneys have started to fail. Pray for strength, peace and a miracle for both of these boys.
"Why art thou cast down, O my soul? And why art thou disquieted within me? Hope in God: for I shall yet praise Him, who is the health of my countenance, and my God." Psalm 43:5
I have set the Lord continually before me; Because He is at my right hand, I will not be shaken." Psalm 16:8
In Christ,
Joy
Monday, January 30, 2006 1:26 PM CST
I'm so excited to write this journal entry. Today is Connor's last day of chemotherapy for this transplant. Because we believe that God is healing Connor and the cancer will not come back, this will be the last day EVER that he will get chemotherapy. Praise God!
"The Lord is good, a stronghold in the day of trouble; and He knows those who trust in Him." Nahum 1:7
"Call unto me, and I will answer thee, and show thee great and mighty things." Jeremiah 33:3
We are so grateful to God that Connor will have this part of the treatment behind us soon. After he gets his bone marrow back on Wednesday, we will just be waiting in the hospital until his counts start rising. It may take a couple of weeks for his new bone marrow to start working and producing red/white blood cells and platelets. In the meantime, please pray for no infections/viruses and no mouth sores while his white blood count is low.
Since this is his last day of chemotherapy, Connor should start growing hair again. I bet he'll have a nice short haircut by his diagnosis anniversary of May 15. My friend, Carrie Hudson, said she's never known Connor with hair. I forget that some people met Connor after his diagnosis. His classmates don't even know him with hair. Most of the people at our new church don't know him with hair either. I'm excited at the prospect of seeing him with hair again, although I'll miss his sweet, soft, bald head. He's such a cute bald guy!
Connor is feeling remarkably well, considering everything. He's still eating (a little bit) and he's still fairly energetic. He's playing with the physical therapists this morning and he had fun playing catch with cousin Lexie this weekend. MacKenzie played on the computer with Connor yesterday, and they also played "Candy Land" and the Sponge Bob video game. I'm so impressed that he is tolerating everything so well. He is still throwing up a little bit and he now has diahrrea, but he just keeps on amazing me with his stamina and spirit. I know this is a result of all your prayers. Thank you so much for your faithful prayers. Also, thanks to all the nurses and doctors at Children's Medical Center. They take such great care of him!!!
Please continue to pray for the specific prayer requests I listed last week. Thanks.
"The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak." Isaiah 40:28
In Christ,
Joy
Thursday, January 26, 2006 12:06 AM CST
Dear Friends,
Thanks again for all your prayers and encouragement. Connor is doing very well. It has taken me awhile to update the website because Connor constantly wants me to play with him. So, forgive me for the delay, but I'm so glad that he feels this good.
We have now finished the first chemo drug, the one that can burn his skin. The frequent bathing and dressing changes will end today. Connor should sleep better tonight because the nurses won't have to wake him up at midnight and six a.m. to bathe him. That was rough - throwing a kid in the shower when they are half asleep. Ughhh!
They started the second chemo drug yesterday. This is the one that can damage his kidneys, so he will be getting a large amount of fluid through his central line. He won't be bathed during the middle of the night now, but he'll be waking up to use the restroom frequently to empty his bladder. No sleep for the weary! The first drug did not cause him much nausea. He's still feeling pretty good - playing a lot with his toys and visitors. This new drug will probably make him feel sick. He should be finished with this drug on Monday and he'll get his stem cells (bone marrow) back on Wednesday. Please continue to pray for the specific prayer requests from last week. Thanks!
We are so thankful to God for his wonderful care of Connor and our family. We are thankful for his healing power and we are thankful for all the prayers that are being lifted up for Connor. We rejoice in the Lord for his infinite mercy and grace.
"In everything give thanks; for this is the will of God in Christ Jesus concerning you." I Thessolonians 5:18
Francis Roberts expands on this verse quite well...
"Rejoice in the Lord always, for as you rejoice and give thanks, you release heaven's treasures and shower upon your head the blessings of a delighted Father. Nothing so thorougly delights the Father's heart as the praises of His children.
For praise exercises the heart toward gratitude. and gratitude nurtures contentment, and you may know for a certainty that no fruit ever appears on the tree of discontent. So praise, My children and never cease in your praising, for in the midst of it I will manifest Myself, and you will understand that when I demand of you your praises, it is for your highest good.
Out of praises come courage, faith, strength, optimism, clarity and peace. Out of praises come health, happiness and the soul satisfaction men seek in the world and do not find."
Let's continue to praise Him for his wonderful blessings!
Please continue to pray for Nathan Spinks and Elisha Henderson. They need your faithful prayers right now.
In Christ,
Joy
Friday, January 20, 2006 2:22 PM CST
Thank you for all your prayers, specifically prayers that the chemo drug would come in today. I just got a phone call from the hospital. They just received the chemo drug. Prayers are so POWERFUL! Connor's counts are also doing well. They continue to rise. I guess we are as ready as we will ever be to start the second transplant.
Connor will go in early Monday morning and start one drug. This drug is excreted through his skin. The drug can cause second to third degree burns; therefore, they will bathe Connor every six hours and change his bandage (on his central line) either 2 or 4 times a day. Needless to say, Connor does not enjoy bathing at the hospital or changing his bandage. Sometimes, (when he is feeling crummy from the chemo meds) it takes two nurses to hold him down, while one nurse changes his bandage. They will have to do this for four days. When we touch Connor, we will have to wear gloves, because we could get burned by touching his skin.
On day 3 or 4 they will switch to a different drug. This drug is harmful to his kidneys, so they will be filling him with a lot of fluids to flush his kidneys frequently. Along with these side effects, there are also the common side effects ... nausea, vomiting, hair loss, hearing loss, etc.
After eight days of high doses of chemo, Connor will get his bone marrow (stem cells) back on day 10. From there, we will wait until his new bone marrow starts to produce new cells... white/red blood cells and platelets. The doctors are predicting that we will be in the hospital for 4-6 weeks this time.
We would appreciate your faithful prayers again as we go through the second transpant. Please pray that....
1. The chemotherapy would kill every cancer cell!!! "Beloved, I wish above all things that thou mayest prosper and be in health, even as they soul pospereth." III John 2
2. The tumors would disappear, so that Connor would not need surgery to remove the tumors. The doctors expect the large tumor in his abdomen to still be there (dead, but still there). I pray that God will remove that one for Connor, as well as the small ones that are in his chest.
3. Connor would not get any viruses, infections, etc. God protected Connor the whole time we were in the hospital last time. He did not get any infections, which could be life threatening while his white counts are low.
4. Connor would not get any mouth sores this time either. Mouth sores start in the mouth and continue down into his digestive system. This is why the patients with mouth sores are on morphine. It is quite painful. I'm so thankful Connor did not get these last time.
5. Pray for strength, stamina, and a strong spirit for Connor to endure this last transplant. "I pray that out of His glorious riches he may strengthen you with power through His Spirit in your inner being. Ephesians 3:16
6. Pray for strength/perseverance for Tait and myself. "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
7. Pray that our whole family would feel God's love, comfort and peace during this whole time. "And I pray that you, being rooted and established in love, may have power together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge - that you may be filled to the measure of all the fullness of God." Ephesians 3:17-19
Thank you so much for your faithful prayers. Tait and I say everyday how thankful we are for every one of you. We enjoy reading your journal entries and it is so comforting knowing so many people are out there praying for Connor. We know that prayers can move mountains!
"Devote yourselves to prayer, keeping alert in it with an attitude of thanksgiving." Colossians 4:2
"Have I not commanded you? Be strong and courageous! Do not tremble or be dismayed, for the Lord our God is with you wherever you go." Joshua 1:9
In Christ,
JOY
Friday, January 13, 2006 8:30 AM CST
We went to the clinic yesterday and we got some good news and some bad news. The good news is that Connor's blood counts are doing well. Every one of them went up from last week. His new bone marrow is working well now. The bad news is one of the chemo drugs Connor needs for his transplant is on back order from the manufacturer. This means we have to postpone the transplant for another week. He is now scheduled for January 23. If the medicine comes in early, we could start sometime next week. Please pray for God's perfect timing. The doctors feel the delay will not affect Connor's treatment. We are still within the suggested time frame for the second transplant. By the way, Connor is feeling great! Thank you for your continued prayers.
Mason will have his hernia surgery next Tuesday, January 17. Please pray for his surgery to go well. He should be able to come home Tuesday afternoon.
Also, continue to pray for the specific prayer requests from last week, please.
Some of my friends have said they like reading the scriptures I post on the website or sometimes something I wrote helps them through something difficult they are going through at the time. I'm so grateful for those comments, because I feel like that is what God is calling me to do - encourage others and be a faithful witness to his awesome working in our lives. Giving our testimony helps us overcome this situation.
"And they overcame him by the blood of the Lamb and by the word of their testimony." Revelation 12:11
Again, I have a quote from Francis J. Roberts.
"He who knows Me intimately will find a deep joy in the midst of life's bitterness; and My spirit dwelling within gives stamina in the face of hardship. I do not smooth out the way for My loved ones, for how then could they testify of My provision? Better your lips were sealed forever than that they should deny Me in the hour of calamity.
I prepare you in order to USE you in the hour of crisis. The crisis is not the time to cry for deliverance, saying, 'Lord save me', but to cry, 'Lord, USE me.'"
That is what I pray for...."Lord, USE me."
Thanks again for you prayers. Please continue to pray for Nathan Spinks. His website is www3.caringbridge.org/tx/nathanspinks and Elisha Henderson at www.elishahenderson.com
In Christ,
Joy
Friday, January 6, 2006 3:26 PM CST
Thanks for your faithful prayers!!! Connor's counts are doing well. His white count has come up again, so we are planning on starting his second transplant on January 16th.
Please continue to pray...
1. that his counts continue to improve
2. that he gets stronger everyday in order to endure this next transplant.
3. that he and our whole family are free from infection/sickness
4. that we enjoy these last few days at home with Connor
I'll give more information next week about the next transplant and specific prayer requests.
I wanted to give you an update on something that I feel has been a major part of Connor's successful progress.
On the day that we started Connor on chemo, we also started him on Glyconutrients. A doctor friend shared with us that his sister had a very rare cancer that would not respond to chemo or radiation. She started taking these Glyconutrients and she has now been tumor free for over a year. By faith, we started him on the Glyconutrients and as a result, he had little or no side effects from the treatments (sores in the mouth, lack of appetite, low energy, infections, etc.). The doctors are amazed at his progress. We believe that the Glyconutrients have been instrumental in his progress.
We know that, above all, God is healing Connor and the power of prayer is "moving mountains" for him. We just felt like these Glyconutrients would be very helpful for him, too.
For those of you who do not know about Glyconutrients, they are necessary nurients that we are not getting in our foods today. This is a new discovery that has been made in the area of cell communication. The science just made sense to us.
We now believe that God is calling us to share this information with others. We are making gift baskets that have the Glyconutrients in it, along with books and materials on faith and healing. I've handed a few of these out to friends who are battling cancer and other health issues, and I plan to hand out many more.
If you know of anyone who would like to receive more information about the science of Glyconutrients please let me know...
I'll leave you with this devotional from Francis J. Roberts.
"Many are the afflictions of the righteous, but the Lord delivers him out of them all." Psalm 34:19
"My children do not enjoy immunity to trouble, but in the midst of each painful experience My Spirit is at work fashioning beauty in the soul. It matters not how long the day or how steep and how hard the road. If only you may see My face and know I bear the load.
Be patient in tribulation and I will minister My grace to you and your heart will rejoice, yes, more than in the day of pleasantness. For when outer blessings are withheld, inner peace is deepened, for the soul turns to worship with less distraction. Joy and contentment will crown your head, and peace will reign in your heart."
Please pray for a little boy, Nathan Sphinx, who has a brain stem tumor. He's in ICU at Children's Medical Center. He needs a miracle from God to be healed. His website is www3.caringbridge.org/tx/nathanspinks
In Christ,
Joy Cruse
Friday, December 30, 2005 3:33 PM CST
I hope you had a wonderful Christmas! We truly enjoyed ours. Simply being at home and being with our family was the best Christmas gift this season.
Connor enjoyed his Christmas, even though it was somewhat limited in where he could go this year. Some friends of ours, Mark and Anne Vehslage, rented a Hummer Limo a couple weeks ago and they invited us to go along with them. We had a wonderful time looking at all the Christmas lights. We've also caught up on our movies these past few weeks. The movie theater is one place that Connor can go if he wears his mask.
My family came to my house on Christmas Eve and we had a good time. Uncle Clark wasn't in the house five minutes and he was already chasing the kids yelling and screaming through the house. I hope he never grows up! Uncle Brent was taking care of Mini Me (Carson) and Uncle Rod rocked Mason to sleep. On Christmas Eve night, my Dad, Tait, MacKenzie and I went to the Christmas Eve service at our church. Mom and Grandma Mann stayed home with the other kids. Chistmas Day was spent with Tait's family at our house. The kids played with their new toys while the adults sat outside by the fire and relaxed.
We did have a visit from Santa Claus at our home one night. Connor sat on his lap and told him what he wanted for Christmas. After he jumped off Santa's lap, Tait asked Connor why he didn't wish for his "tummy bug" to be gone. Connor said, "Silly Daddy, God is going to do that." Connor's a pretty smart kid, if I don't say so myself.
Connor's red blood count and platelets are doing well, but his white count went down. His ANC (which is part of his white count) went below 1000, so his transplant will be delayed until January 16. They want to see his ANC above 1000 for three weeks before transplant. Please pray for his white count to come up!!!!!! Also, pray that he remains well while his white count is low.
"Hear, O Lord, and answer me, for I am poor and needy.
Guard my life, for I am devoted to you.
You are my God; save your servant who trusts in you.
Have mercy on me, O Lord, for I call to you all day long.
Bring joy to your sevant, for to you, O Lord, I lift up my soul.
You are forgiving and good, O Lord, abounding in love to all who call to you.
Hear my prayer, O Lord; listen to my cry for mercy.
In the day of my trouble I will call to you for you will answer me....
But, you, O Lord, are a compassionate and gracious God, slow to anger,
abounding in love and faithfulness.
Turn to me and have mercy on me;
grant your strength to your servant and save the son of your maidservant."
Psalm 86:1-7, 15 & 16
In Christ,
Joy
Thursday, December 22, 2005 4:32 PM CST
Good News!! Connor's white blood count and platelets are coming up nicely. His red blood count has decreased a little bit, so he will get a blood transfusion tomorrow. The blood transfusion should make him feel great for the Christmas weekend. The doctors aren't concerned about his red blood count being low. It just means his bone marrow is kicking in a little slowly, but it is working. He will probably start his next transplant around January
9 or 10. He should be good and strong by then.
We found out Monday that Mason has a hernia in his groin area and he will need surgery. He will have his surgery in January. What a busy January we will have.
Specific prayer requests
1. Pray that Connor's counts continue to rise and that he regains his strength to endure this next transplant.
2. Pray that he is free from infection and sickness while he's out of the hospital.
3. Pray that we would be able to start his transplant on time and there would be no delays.
4. Pray that our whole family will remain well so that we don't get Connor sick.
5. Pray that Mason's surgery goes well in January.
6. Pray we enjoy and appreciate every moment with our family this Christmas Season.
7. Please pray for our friend Elisha. He may have to go back in the ICU, so he will not be home for Christmas. Please visit his website, so you know how to pray for him specifically. www.elishahenderson.com
I've mentioned two specific names of God that mean a lot to me right now ... Prince of Peace and The Great Physician. Another name that has special meaning to me right now is Lamb of God (how appropriate for the Christmas season).
"The next day John saw Jesus coming toward him and said, 'Look, the Lamb of God, who takes away the sin of the world." John 1:29
There are several verses that explain the significance of Jesus being the Lamb of God.
""Who Himself bore our sins in His own body on the tree, that we, having died to sins, might live for righteousness, by whose stripes you are healed."
I Peter 2:24
"He was wounded for our transgressions, he was bruised for our iniquities; the chastisement for our peace was upon Him, and by His stripes we are healed."
Isaiah 53:5
"I have told you these things so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."
John 16:33
Because of these truths, I have assurance that God is in control. Because he died for me, I know that His love for me is great. I need not have fear of anything!
Merry Christmas to you all!
Joy
Thursday, December 15, 2005 6:04 PM CST
Connor is doing well. He feels great and he's still tired of being stuck at home. He really gets bored when MacKenzie and Carson are at school. I'm glad they are out of school for two weeks now. Connor will enjoy having his play buddies at home.
Connor's blood counts are still not improving. His platelets have come up slightly, but his red blood count and his white blood count have come down. The doctors feel that his new bone marrow has not started working completely. Please pray that his counts start improving over the weekend. He may need a blood transfusion Monday if his counts don't start improving. They are hoping to start his next transplant on January 3, but his counts need to be holding steady and improving first. This may delay his transplant for about a week or so.
Specific prayer requests......
1. Pray that his bone marrow would start working completely so that his counts will come up.
2. Pray that he regains his strength and his counts improve so that he can start his next bone marrow transplant sooner rather that later. We are all ready to get this behind us.
3. Pray for his protection from viruses, infections, etc. while his white count is down. We would really love to stay home for Christmas - no unexpected trips to the hospital.
4. Pray that the rest of our family stays healthy so that we don't infect Connor.
Thank you for your continued prayers for Connor and our family. We really appreciate all that you do for us.
Last time I mentioned several names for God, like Prince of Peace, and how that name had special meaning to me right now. Another name that holds a special meaning to me right now is The Great Physician.
There are many verses in the Bible about Jesus healing people and giving us strength. Here are a few of my favorites.
"By the stripes of Jesus, I am healed." I Peter 2:24
"..but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31.
"I will restore health to you, and heal you or your wounds." Jeremiah 30:17
"Come to me, all who are weary and burdened, and I will give you rest." Matthew 11:28
"He who raised Christ from the dead will also give life to your mortal bodies through His spirit who dwells in you." Romans 8:11
"He sent His word and healed them, and delivered them from their destructions." Psalm 107:20
"O Lord my God, I called to you for help and you healed me." Psalm 30:2
"He heals the broken-hearted and binds up their wounds." Psalm 147:3
There are many others, but these are just a few verses that remind me of God's awesome power to heal us, and give us strength and life. Praise God for being the Great Physician.
In Christ,
Joy Cruse
Wednesday, December 7, 2005 3:26 PM CST
Since Connor has been home, he has been feeling great. His appetite is wonderful and he's very energetic. He doesn't seem like a kid who's been in the hospital for almost a month. Thank you for all your prayers during his autologous bone marrow transplant. There were so many things that could have gone wrong or been a lot worse, and God was gracious to us. He had His hand over Connor during the whole time. I'm so glad that the first transplant is behind us.
The hardest things for Connor right now are his special low bacteria diet and his restrictions from going out in public. He can't eat fresh fruit or vegetables, yogurt, shrimp, lobster, nuts, etc. He can't eat at a restaurant either. Tait and I should save a lot of money this month because we can't eat out. He's also got bad cabin fever ALREADY. He can't go back to school or church until 100 days past his second transplant. When he goes out in public, he has to wear a mask and he has to go at non-peak times. With all these precautions, he still caught a cold....from his brother, Carson.
I mentioned earlier that Connor has a prayer pager. The pager comes from a Foundation called the Coach Charlie Stalcup Foundation. "It was established to provide funding and services to families fighting cancer that may experience special circumstances or have extraordianary requests. The purpose of the foundation is to reflect what Charlie did every time he taught in a classroom or coached on a football field. He provided hope and faith to those in need. The goal of the foundation is to maintain an eternal legacy honoring his life. If you would like to join their mailing list as a prayer partner, please send an email to bgoss@coachcharlie.org and include your first/last name and email address with 'Prayer Partner' in the subject line."
I'm sure you could contact them if you know someone who has cancer and would like to sign up for a prayer pager.
During this Christmas season, I've been thinking about all of the many different names for God, like Prince of Peace, Lamb of God, King of Kings, etc.
I've always known these names, but during Connor's illness I've experienced what they truly mean.
One name that has special meaning to me right now is Prince of Peace. "For to us a child is born, to us a son is given, and the government will be on his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace." Isaiah 9:6
There are two verses that I love to read that give me peace when I feel afraid or troubled. "Peace I leave with you, my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 It is so true that God gives us a peace that this world cannot give. I'm so glad I'm plugged into a God who gives me his wonderful peace.
"And the peace that passes all understanding will guard your hearts and your minds in Christ Jesus." Phillipians 4:7
So many people have asked me how I get through this. The answer is God gives me his peace when I cannot find it in the doctors answers or when I fear for Connor's future. He gives me his peace when I see suffering on Connor's face or when Connor says he misses his family while he cannot see his siblings during the transplant. He gives me his peace when Carson says, "When is Connor coming home? I miss my Bruder." Thank God for his "peace that passes all understanding."
Please continue to pray for Connor's counts to rise and for him to get over his cold. Also, pray for complete healing. I have peace because I believe God will heal my little boy. Connor's life will be a geat testimony for God's healing power.
In Christ,
Joy
Thursday, December 1, 2005 8:56 AM CST
Praise God!!!! Connor is coming home today! His counts are good enough for him to come home.
"The Lord is gracious and righteous; our God is full of compassion. The Lord protects the simple hearted; when I was in great need, he saved me. Be at rest, once more, O my soul, for the lord has been good to you." Psalm 116: 5 &6
They unhooked him from his IV pole on Monday and he's been running around the room and the hallway like a dog unleashed for the first time. He was hooked up to that pole for 21 days. When I delivered Mason, I was hooked up to my IV pole for 16 hours. Can you imagine being hooked up to that pole for 3 weeks? I can't. After they unhooked him, he had to start eating, drinking and taking his meds orally, which he finally did.
I think part of the reason he gets to come home before the weekend is that he is so hyper and he's running circles around the doctors and nurses. God is definitely giving Connor strength and endurance. When Connor is so energetic, he wears me out. But, I just remind myself to be grateful that he is running around like a crazy guy instead of laying around on the couch all day with no energy at all.
His platelets are still a little low, so the doctors are worried he may continue to have nosebleeds that won't stop. He's had several nosebleeds in the hospital and they don't stop until they give him platelets. Please pray that his platelet count starts to come up soon. The doctors said that is usually the last thing to rise.
On a different note, Connor and his girlfriend, Mollie Claire, are doing a photo shoot this morning for the Dallas Morning News. There will be an article about them in Saturday's addition. Mollie Claire will be in the Dallas Children's Parade Saturday and she's going to hold up a sign that says, " I love Connor." She wanted Connor to be in the parade with her, but he can't because his immune system won't be good enough. She wanted to do something special for him, so she thought of the sign. The hospital told the DMN about their friendship and Mollie Claire's desire to do something special for Connor while he is sick. The newspaper decided to do a story about it and show how chldren can make such a difference with little acts of kindness. I think it will be so sweet. Connor is lucky to have a friend like Mollie Claire.
Friday, November 25, 2005 4:40 PM CST
Happy Thanksgiving!!!
I hope you have all had a wonderful Thanksgiving. Tait and I are counting our blessings. We are thankful for our family and wonderful friends who have supported us through this difficult journey. We could not go through this alone. Thank you everyone for your prayers and support.
We are thankful for our new little addition, Mason, and our other children, Mackenzie, Connor and Carson. Tait and I are thankful for each other and our great marriage. We are grateful that Connor is getting great care here at Children's Medical Center and that he is doing so well.
The doctors gave us great news today. His counts have started coming up!!! Yeah!!! He'll get to come home approximately one week from today. He is feeling great and almost back to his energetic self. He still does not have any mouth sores and no infections. Please continue to pray for no infections. He is still at risk because his counts are still low.
Above all, we are thankful for an Awesome God! We have a loving and merciful God who cares for us. Throughout this whole ordeal, there have been so many times when God has taken care of us. He's provided us with so many prayer warriors and an awesome support team in friends and family.
He has taken such great care of Connor. Connor has shown such great spirit and endurance. He doesn't complain about hospital stays, throwing up, shots, etc. God has kept him free of infection and mouth sores during the last six months. He has heard us and answered so many of our prayers, like the sinus biopsy was clear and the hospital collected enough stem cells for two transplants. There are so many other examples of answered prayers, but I'm sure you don't have enough time to read them all. I'm rejoicing today for all of God's miracles in our lives.
I know Connor feels God's presence every day. Connor shows a peace and comfort that only God can give. Last night, Tait spent the night with Connor and Connor told Tait that he loved God so much. After a long conversation, Connor asked Jesus into his heart. Tait and I rejoice together and we know God is holding Connor in the palm of His Hand!
"He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the Lord, He is my refuge and my fortress, my God, in whom I trust. Surely he will save you from the deadly pestilence. He will cover you with his feathers and under his wings you will find refuge; his faithfulness will be your shield and rampart." Psalm 91:1-4
Enjoy your Thanksgiving and give thanks to the Lord for your many blessings.
"Praise the Lord. Give thanks to the Lord, for he is good: his love endures forever." Psalm 106:1
Happy Thanksgiving,
Joy
Sunday, November 20, 2005 9:40 PM CST
Again, thanks for all your prayers!! They are working. The doctors expected mouth sores by this weekend. On Friday, Tait and a nurse thought they saw two mouth sores. Today, the doctor and nurse could find none!!!!! I know this is very rare for a child not to have mouth sores during a transplant. God is watching over our little boy and answering our prayers. Please keep praying for no mouth sores and no infections. His white count is still at zero, so he is very succeptible right now to infection.
Our friend, Patrick, is staying with Connor tonight and he called to say he needed a sedative for Connor because he is wound up. Yeah!!! He's starting to feel better and he's becoming more active. He's been a couch potato for a week now, so I'm glad he's getting some of his old energy back. Please continue to pray for his counts to come back quickly, so Connor can come home. He should be able to come home sometime the week after Thanksgiving.
There is a foundation called the Coach Charlie Stalcup Foundation. They have provided a prayer pager for Connor that encourages us every day. Everytime someone prays for Connor, the pager beeps so we know that he's being prayed for. if you would like to beep Connor when you pray for him, dial 214-332-1145. Enter your zip code then the # button. I'll give more info on this next time when I can elaborate. Mason calls now!!!!
Please continue to pray for Jacob and Elisha. Elisha is now in ICU because he is having trouble breathing. He's on a ventilator. Thanks for your prayers. We could not go through this without all of you - our Prayer Warriors!! Also, pray for a boy named Trenton. He has neuroblastoma and he just finished his second transplant. His website is www.trentonsjourney.com.
Thanks,
Joy
Wednesday, November 16, 2005 3:10 PM CST
Connor received his stem cells on Monday. It was just like getting a blood transfusion, only quicker. It only lasted a couple hours. He's doing well. He is feeling better and he's actually eating some food. The nurses are surprised he's eating. Most kids don't eat while they are in the Bone Marrow Transplant Unit. He's playing basketball and baseball in the hallway again with the physical therapists, so he's definitely getting some of his old energy back. Uncle Tom spent the night again last night, so I'm sure Connor spent several hours playing with him.
His counts are pretty low today, so they'll give him a blood transfusion today. He may need platelets later in the week and his white blood cells are pretty low, also. This is when we need lots of prayers for no infections. Also, please pray for no mouth sores - which should show up by this weekend if he's going to get them. Pray his counts will come up quickly, so he can go home in a timely manner - hopefully by the 28.
Please pray for our friend Elisha, who's in the hospital right now for stomach problems. He continues to throw up and the doctors can't figure out why. I mentioned Elisha on the website before - his website is www.elishahenderson.com.
Also, please pray for another five year old boy in Florida named Jacob. He's got a rare form of an adult cancer and while his immunity was suppressed due to the chemo, he contracted the BK virus and now several of his organs have quit working. He's currently in PICU and he's hooked up to many tubes to help his organs function properly. His website is www3.caringbridge.org/fl/jacob.
Thanks for your prayers for Connor and these two young boys. I have found that my prayer life has increased immensely - not just for Connor but for many others as well. I feel so blessed that so many people are praying for Connor, and I feel I should return the favor by praying for others who are sick or going through trials.
"Pray for each other so that you may be healed."
James 5:16
Before we started the transplant part of Connor's treatment, I was dreading what it would be like for Connor. I know that the kids can be pretty miserable during the transplant. Whenever my thoughts would turn to these fears I would listen to the song "My Hiding Place," by Selah.
"You are my hiding place. You always fill my heart with songs of deliverance. Whenever I am afraid, I will trust in you. I will trust in you. Let the weak say I am strong with the strength of the Lord. I will trust in you."
In Christ,
Joy Cruse
Saturday, November 12, 2005 1:46 PM CST
I wanted to update you on Connor's progress, but I'm leaving my last update on so everyone will get a chance to read our grateful thank you's.
Connor is doing well, but the effects of the chemo are beginning to show. He feels tired and nauseated. He throws up once or twice a day and he has diahrrea now. Because he is too nauseated to eat, the nurses have started him on TPN, which is a nutritional supplement that goes thru his central line. Despite all this, he's still a trooper. He doesn't complain at all. He makes it so easy for Tait and myself to take care of him.
He will get his last dose of chemo today and he will get his bone marrow back on Monday. The doctors said his red/white blood cells and platelets will be bottomed out next week. Please pray that God will protect him from mouth sores and infections until his white count comes back up. Once they have given him back his bone marrow, it will take anywhere from 7-14 days for his counts to come back up. Please pray that they will come back up quickly. He will not be allowed to go home until his counts come back up and stay up on their own (without the aid of neupogin shots). Again, thanks for all your prayers and support.
"For I will restore health to you and heal you of all your wounds."
Jeremiah 30:17
Your prayers must be working, because Connor is doing great! He'll be on this chemo med for 72 continuous hours. He will also get two other chemo meds sporadically throughout the five days. So far, he has tolerated it very well. Today, he played baseball in the hallway with the physical therapist and he continues to sword fight with the nurses. He played Army with his friend, Al Flanagan, last night and today he played dinosaurs with Brittney Goellner (our friend who helps me take care of the kids). He threw up in the middle of the night, but after some zofran medication, he was doing much better.
Thank you so much for all your prayers. I know God is hearing them all, and He's wrapping His loving and protecting arms around Connor. Everyone in the Bone Marrow Transplant Unit is so surprised by Connor's energy and hyper-activity. I guess they don't know Tait very well or they wouldn't be surprised by the hyper-activity. haha! Please contine to pray for all the specific prayer requests from the last journal entry.
"I love the Lord because He hears and answers my prayers. Because He bends down and listens, I will pray as long as I have breath." Psalm 116:1-2
"All those who know your mercy, Lord, will count on you for help. For you have never yet forsaken those who trust in you." Psalm 9:10
I also wanted to thank several different people/groups of people. This is long overdue, so it may be long. First of all, thank you to Tait's sister, Christie, for creating this website. She has done a fantastic job. If I had to create this website, I would be bald like Connor because I would have pulled all my hair out by now. Secondly, thank you to my Mom, Aunt Cody, my niece Lexie and Brittney for taking such great care of our children and keeping the house clean (which is no small feat with four children).
Thank you to everyone at Tait's office for bringing meals to the hospital every time we are here, starting from the very first week of diagnosis. Thank you to our Sunday School Class at Prestonwood, my bible study, Connor's play group friends and my brother's company, Rodman Excavation, for bringing us meals at home.
Thank you to Christine O'Brien, Elizabeth Collins, Kristin Gile, Kim Gekiere, Paula Caldwell, and Carrie Hudson for carpool help with all the kids. Thank you to several friends who have helped out with the kids or stayed with Connor at the hospital - Uncle Tom, Uncle Brent, Uncle Clay, Aunt Pam, cousin Mitch, Rick Gershon, Kim Lloyd, Patrick (Boss)& Kelli Matthews, Al & Kelly Flanagan, Denese McNair, Nikki Anderson, Keith Roach, Shannon Callaway, Pat Stevens, Suzanne and Meredith Moore, Miranda Linane and Carla Morrison. Thank you to Dane and Holli Citelli for making Connor's Lemonade Stand. If I forgot to mention your name, I'm sorry. Also, thanks to everyone who has visited with Connor at the hospital.
Thank you to Prestonwood Baptist Church, our Crosswalk Sunday School Class, our bible study friends of 11 years and Prestonwood Christian Academy for your wonderful care and Christ-like love. Connor is truly surrounded by your prayers and support. Thank you to Mrs. King and Mrs. Simms (Connor's Pre-school teachers) for loving him so well. He will miss you and his classmates so much until he sees you again in April.
Thanks to the doctors and nurses at Children's Medical Center. We really appreciate how well you take care of Connor and how you are so patient with a wiggly, energetic, and sometimes tired and cranky 5 year old boy.
Here is my prayer for all of you ....
"The Lord bless you and keep you; the Lord make his face shine upon you and be gracious to you; the Lord turn his face toward you and give you peace."
With love and gratitude,
Joy Cruse
Friday, November 4, 2005 8:35 AM CST
We are still on track to start the transplant on Tuesday. The first five days Connor is in the hospital, he will receive high doses of chemo, which will make him very sick. They give him these high doses to wipe out all the cancer cells. Unfortunately, the cancer is not the only thing being wiped out. His good cells will be destroyed also, especially his bone marrow/stem cells. On day 7, they will give Connor back his bone marrow/stem cells. The transplant itself should not have any adverse effects on Connor. It's the high doses of chemo which will give him bad side effects.
At some point after the transplant, Connor's red & white blood counts and platelets will bottom out. He will receive several transfusions to fix his red blood count and platelet count, but we will just have to wait for his white count to come back up on its own. I'm sure they'll be giving him shots to speed up that process. When his white counts are down to zero, that is when he is at a high risk for infection. This is when we'll need you to pray for his protection. After his counts come back up, his mouth sores have disappeared and he is able to eat again, he should be released from the hospital. Hopefully, he'll be home in 3 weeks. It could be as long as four.
Here's a list of what to pray for specifically....
1. The chemotherapy kills the cancer completely. Pray the chemo will protect his good cells and target all the cancerous cells. Pray all the tumors will disappear so that Connor will not have to undergo surgery to remove them. If all the tumors disappear, that would truly be a HEALING from God. The doctors expect some of them to remaining after the transplant - dead, but still there.
2. God gives Connor strength to endure the transplant. Pray that Connor is filled with God's peace, love and strength.
3. Connor would not get mouth sores inside his mouth/esophagus/stomach. Because of the mouth sores, Connnor may be on a morphine drip for the pain. If he gets the mouth sores, pray they heal quickly and they are not severe.
4. Connor will be protected from the bad side effects of the chemotherapy he'll be given before the transplant. Side effects would be loss of hearing to the extent of hearing aids and speech therapy, damage to the kidney/bladder, weakening of the heart muscle, sterility, etc...
5. Connor would not get an infection when his white counts are low. If he gets an infection that his body cannot fight, he could die from the infection.
6. Connor's new bone marrow/stem cells would start working quickly once they have been put back in his body.
7. That Connor would not lose too much weight while he is not eating.
8. Tait and I would have strength to endure this difficult time- watching Connor suffer. Help us focus on God and not these temporary circumstances.
9. God would help us juggle our schedule with the other 3 kids, especially the new baby. Pray that God wraps his loving arms around our children so that they feel safe and loved.
"God is our refuge and strength, an ever present help in trouble." Psalm 46:1
"Let him take hold of My strength." Joel 3:10
"This is the confidence we have in Him, that if we ask anything according to His will, He hears us. And if we know that He hears us - whatever we ask- we know that we have what we asked of Him." I John 5:14-15
Thanks again for all your prayers and messages on the website. We are so thankful for all your support.
In Christ,
Joy Cruse
Friday, November 4, 2005 8:40 AM CST
Good morning,
We are getting ready to take the kids to the ranch this weekend to get Connor out with the cows and ride the big tractor and the gator. He is excited to go look for deer with Dad and his Grandfather. We go in Tuesday for the start of the transplant. Please pray for: no infection,no mouth sores or bottom sores, that the chemo kills the cancer, and for quick healing so he can go home before
Thanksgiving. The Lord has given us two recent miracles. The first was the sinus cancer is gone, and the Doctors say they are "puzzled" the second is we got enough stem cells for the the two transplants which the Doctors did not think would happen. So Praise God. Thank you for your prayers and support-how can we say thank you enough. We love you all and we are ready to go in the hospital for the next three to four weeks and get Connor through this first of two. Joy and I know many of you will be there. Love Tait
Friday, November 4, 2005 8:40 AM CST
Good morning,
We are getting ready to take the kids to the ranch this weekend to get Connor out with the cows and ride the big tractor and the gator. He is excited to go look for deer with Dad and his Grandfather. We go in Tuesday for the start of the transplant. Please pray for: no infection,no mouth sores or bottom sores, that the chemo kills the cancer, and for quick healing so he can go home before
Thanksgiving. The Lord has given us two recent miracles. The first was the sinus cancer is gone, and the Doctors say they are "puzzled" the second is we got enough stem cells for the the two transplants which the Doctors did not think would happen. So Praise God. Thank you for your prayers and support-how can we say thank you enough. We love you all and we are ready to go in the hospital for the next three to four weeks and get Connor through this first of two. Joy and I know many of you will be there. Love Tait
Thursday, October 27, 2005 10:16 PM CDT
Connor has been in the hospital everyday this week harvesting his stem cells for his future transplant. He comes home every afternoon, so at least he does not have to spend the night. We need your prayers tonight. We do not have enough stem cells yet for 2 transplants. We are going in an extra day tomorrow to try one more time. If we do not get enough stem cells tomorrow, Connor will be admitted for another round of chemo (five days) and then we'll remove more stem cells from his bone marrow later in November. This would, of course, postpone his transplant. Please pray we get enough stem cells tomorrow. It is a long shot, but God can move mountains. I know He can do this for Connor.
"If you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you." Matthew 17:20
"May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit."
Romans 15:13
Thanks for all your prayers.
Joy Cruse
Friday, October 28
Well, God moved our little mountain today. We just got a call from the nurse and we have enough stem cells for the transplant!!!!!!!!!!!!!!! I think they are quite surprised at the hospital. I guess they don't know our God as well as we do. Anyway, we are set for transplant November 8. I can't believe it is finally here.
I'm so amazed that our Awesome God would take such an interest in me and my family that He would answer even our smallest prayer/need. I'm so amazed by his loving care. It reminds me of the song from Casting Crowns , "Who am I?"
"Who am I?
That the Lord of all the earth
Would care to know my name,
Would care to feel my hurt.
Who am I?
That the Bright and Morning Star,
Would choose to light the way,
For my ever wandering heart.
Not because of who I am,
But because of what You've done.
Not because of what I've done,
But because of who You are.
I am a flower quickly fading,
Here today and gone tomorrow,
A wave tossed in the ocean,
A vapor in the wind.
Still You hear me when I'm calling,
Lord, You catch me when I'm falling,
And You've told me who I am....
I am Yours."
Thanks again for all your prayers. We appreciate it so much. Also, I wanted to mention that Childrens' Medical Center is going to build another hospital in Plano. It is set to open early '08. This will be awesome for Collin County and the surrounding areas. They had a ground breaking ceremony on Wednesday and Connor got to be a part of the ceremony. Bob the Builder was there and Connor loved that. All the kids got their own shovel to dig in a huge pile of dirt. Connor did not want to stop digging in the dirt. He had a blast!!!
"The Lord is good, a refuge in times of trouble. He cares for those who trust in Him." Nahum 1:7
Thanks,
Joy Cruse
Thursday, October 20, 2005 9:31 PM CDT
Mason and I came home Wednesday and he is doing great. We'll have pictures for the website soon. Aunt Christie is working on adding some new pics to the site. We feel so blessed to hold this little one in our arms. I feel he went through so much before he was even born. I think I have another tough little superhero on my hands. Thanks to all of you who have been praying for little Mason during my pregnancy. I know that God has heard your prayers and blessed us with a wonderful gift.
"for you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:13-14
We finally got the report back on Connor's biopsy and they could not find any signs of "live" cancer. Either, there was no cancer there to begin with or it is gone/dead now. Great News!!!! God answered our prayers again. No matter how scared or unsure Tait and I may become, God is always there. Through it all, He has always been faithful. "Let us hold fast the confession of our hope without wavering, for He who promised is faithful." Hebrews 10:23
We are still on track to start the first transplant the second week of November. We will harvest his stem cells next week (Mon- Thurs.) Thanks again for your continued prayers. We are forever grateful for your faithfulness.
In Christ,
Joy Cruse
P.S. I spoke with Elisha's mom today at the clinic. He is doing well. They will lower his steroid amt soon - which means his treatments are working. He had a cat scan today to check his lungs. Please pray for his lungs to be clear and for his continued improvement/healing. www.elishahenderson.com
Tuesday, October 11, 2005 5:21 PM CDT
MASON WILLIAM CRUSE born around 8:30 pm Monday Oct. 17th weighing 5 lbs 15 oz. Mother and baby Mason are doing fine.
Tomorrow, Tuesday Oct. 18 Connor goes for a biopsy of something found in his sinuses. Pray for it to be just a sinus infection or a cycst/polyp!
We have had a busy weekend. On Friday, we packed our bags and headed to Loyal, Oklahoma (my hometown). We went to visit Uncle Clark, Aunt Patricia, and cousins Sheena, Landon and Codi. They live on a farm, so we had lots of fun.
Our first stop was Mrs. Winnie's PK4 class at the Lomega Grade School. Those of you who read the guestbook entries know who she is. Connor had a great time meeting all the children and looking at their superhero wall. My kids played on the playground after school for awhile, so Mommy could catch up with her old friends and teachers. I saw my fourth grade and kindergarden teachers along with some of my classmates, who are teachers now. Thanks, Mrs. Winnie, for letting us visit your class.
Next, we met Uncle Clark, where he was working cattle. We all helped feed the cattle and Uncle Clark let us pet his bull. He was so huge (the bull, not Uncle Clark). All weekend we played with the new kittens, jumped on the trampoline and rode the tractor. We also had a wienie roast and ate smores. After church on Sunday, we had to head home. We'll have pictures from the farm very soon for the website. Thanks Clark and Trisha for such a great time.
Monday, we went to the hospital for blood counts and a blood transfusion. Connor is now his old energetic self, after receiving some blood. His white count is awesome right now - higher than it has been since he started the chemo. I think God is getting him ready to harvest those stem cells.
Connor went with his class to a pumpkin patch today. He had an awesome time. His favorite part was chasing the chickens. Maybe he is part fox. He brought a pumpkin home with him. He is looking forward to carving it with Daddy soon. We hope to have some pics from this, too.
I almost forgot to mention that Tait took Connor to the season opener for the Dallas Stars Hockey Team last Wednesday for Connor's birthday. He had a blast. His seat was right in front of the glass. He got lots of hockey pucks and a hockey stick.
We're having a great week this week. Connor has a few more tests to do at the hospital Thursday and Friday, but next week he only has to go to the hospital one day. Yeah!!!!!! Thank goodness, since we'll be busy with the new baby next week.
Thanks for your continued prayers. We appreciate it so much and we love to read all your entries on the website. Continue praying for Connor's strength and pray he has a great few weeks before the long journey that begins with his first transplant.
"For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me and I will listen to you. You will seek me and find me when you seek me with all your heart." Jeremiah 29:11-13
In Christ,
Joy Cruse
Thursday, October 6, 2005 9:28 PM CDT
Good News! Connor's bone marrow is clean - AGAIN! It's for real this time. We have a new schedule. We'll harvest Connor's stem cells (for the future transplant) the last week of October. We'll go to the hospital four consecutive days for several hours to harvest his cells. They will hook a machine up to Connor's central line that will pull his blood out, spin the blood and remove his bone marrow/stem cells and then put the blood back in him through his central line. It is not painful, only tedious. We hope to get enough stem cells for 2 transplants. If not, the doctor will have to surgically remove it from his bone marrow/spine. If we get enough stem cells from those four days, he will start his transplant (stem cell rescue) process the first week of November. If they have to surgically get more, his transplant will start the second week of November. Please pray that they can harvest enough stem cells in those first four days. He'll be in the hospital for approximately 20-30 days. The transplant unit is on the 10th floor.
I'm going to be induced October 17th. Please pray that the delivery goes well and I can recover quickly. Also, pray for a healthy baby Cruse. I'm glad I'll get to spend a little time with the baby before Connor goes to transplant, because the baby is not allowed in the transplant unit. Needless to say, my time with the new baby will be limited once Connor starts his transplant.
Please pray that Connor's birthday wish comes true. He whispered in Mollie Claires ear what his wish was. "I wish that I beat the tummy bug." (That's what he calls his cancer.) Continue praying that he gains strength for the challenge that is quickly drawing near and that he enjoys his last days of "freedom."
I know that God will give us the strength we need to endure the days ahead. Here's a couple paragraphs from Frances J Roberts devotional.
"Be of good cheer, I have overcome the world."
John 16:33
"In every place where I call you to go, there will I be in the midst, ministering of My Spirit, saving, healing, and delivering. I will not desert you in the place of need or of service. If you are obedient in doing My will, I will never fail to uphold you and strengthen you."
"Why do you falter? Heaven's gates are open to your cry. Ask of Me great things. Lo, have I not promised to give BEYOND all you ask or think? Ask in patience, waiting My time of fullfillment."
She based this on Ephesians 3:20. "Now to Him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory."
Thanks for all your prayers and support. We are truly encouraged everyday by your faithfulness and generosity.
Joy Cruse
P.S. Look for pictures of Connor/Mollie Claire's birthday party. Aunt Christie will post them soon.
Monday, October 3, 2005 5:45 PM CDT
We came home from the hospital on Friday and Connor is doing really well. This round of chemo was much easier than the last round. He came home Friday with lots of energy and no signs of nausea. He's eating great again.
His counts are good now, so we had a great weekend. We went to a birthday party at Planet Pizza for Mia and Max Saturday morning and then we played baseball with cousin Lexie Sat. night. On Sunday, we went to Connor's birthday party at the Main Event Bowling Alley. I don't know who's team won - Batman or Barbie - but we sure had fun. The lady who took care of us at Main Event was a breast cancer survivor. She was diagnosed with cancer at age 15. She took great care of us. Also, today Connor went to a Luncheon for the Dallas Stars Hockey team. We ate lunch with the team and we got to meet the players. Connor took his picture with Mike Modano. I'll put the pictures of his party and Mike Modano on the website soon.
The first test on Connor's bone marrow biopsy is clean. If the second test from CA comes back clean, we'll be going to transplant at the end of the month or first of November. I hope to know more about that on Thursday, if I get to see the Doctor then.
We got the results of his cat scan. The main tumor in his abdomen is the same size and the other smaller tumors have not changed significantly. At first, we were disappointed. The doctor explained that with neuroblastoma, it is common for the the tumors not to shrink. The size does not change, but the tumor dies or becomes benign. The results of the bone marrow is a better indicator of what the cancer is doing. If the cancer is dying in the bone marrow, then it is also dying in the tumors. After the transplants, they expect the tumors to be dead. At that point we will either surgically remove them and/or radiate them.
Please continue to pray that the cancer is dying everywhere and that Connor will gain strength to endure the two transplants that are quickly approaching.
"Bless the Lord, O my soul; and all that is within me, bless His holy name! Who forgives all your iniquities, who heals all your diseases, who redeems your life from destruction, who crowns you with lovingkindness and tender mercies, who satisfies your mouth with good things, so that your youth is renewed like the eagles's. " Psalm 103:1-5
In Christ,
Joy Cruse
Tuesday, September 27, 2005 11:00 AM CDT
Connor started round 6 of his chemo yesterday. He received a blood transfusion before he began the chemo treatments. His red blood count was lower than it has ever been (6.9). That explains why he's been cranky lately. Now, he's bouncing off the walls. He's like a person deprived of water who finally gets a gallon of water! He's having sword fights/gun fights with the nurses. I hope he doesn't injure one of them. His Ninja Sword is pretty vicious.
This round of chemo will be a lot easier than the last one. We hope to be home Friday evening. He will have Saturday to rest before his birthday party on Sunday. He and his girlfriend, Mollie Claire, will be sharing their party again this year at the Main Event bowling alley. Their birthdays are one day apart and they have always shared their parties. This year it will be Batman takes on Barbie with the bowling ball. Thank you to Kelli (Mollie Claire's mom) for doing everything to organize the party. She has kindly taken on all of that responsibility. All the children will be donating items to Childrens' Medical Center in lieu of presents for Connor and Mollie Claire.
Last Friday night, Connor had a great time at the PCA football game. He hung out in the locker room with the players before the game. He got to listen to the devotional and prayer before the game. Then, he went on the field with Tim Flores, the cancer survivor I mentioned last week, who is the Team Captain. He got to call "heads" for the coin toss, which he won. After the coin toss, he and Tim followed the team through the spirit line. The team got a jersey with Tim's number on it (99) for Connor to wear that night and he got a football signed by the players. We will post the pictures from the game very soon. I will be getting a disc of pics from Tim's father, Manny, who takes pictures for PCA sporting events and other events. Thank you so much to PCA, Coach Hall, Tim and the whole football team for this wonderful experience for Connor. I know he'll never forget it. It was such an incredible demonstration of love and support. I pray that Connor can see the love of God through all these young men on the football team and everyone else who is praying for him.
"I pray thay you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge- that you may be filled to the measure of all the fullness of God." Epesians 3:17-19
Continue to pray that Conor's bone marrow biopsy is clean this time. I'll give you the reports of his cat scan and biopsy when I get them later this week.
In Christ,
Joy Cruse
Thursday, September 22, 2005 7:48 PM CDT
Well, we have a change of plans. The doctor spoke to me today about Connor's bone marrow biopsy they did at the first of the month. If you remember, there were two tests done on his biopsy. The initial test was done at Childrens' Med Ctr of Dallas and it is the more primitive test. The second test was done in CA and it is much more advanced. The CA test said the marrow was clean. The Dallas test, after looking at it thoroughly, found a questionable area in the marrow. The doctors want to make sure the marrow is completely clean before we harvest his stem cells. We don't want to put those cancerous cells back in him for the stem cell rescue (or transplant). I have to agree with the doctors there!
So, the new plan is that the transplant will happen approximately one month later. When they put in his new central line today, they did another bone marrow biopsy. We should have the report next week. The doctors feel confident it will be clean this time. That round of chemo (cisplatin) after the last biopsy should definitely have wiped out any last cell of cancer in his bone marrow. We'll probably harvest his stem cells near the end of October and start the bone marrow transplant near the first of Nov. Although I'm disappointed with the delay, I'm glad that Connor will not be in the hospital when the baby is born next month and now he will be home for Christmas. God has his own agenda and timing and I am fine with whatever comes my way. We will be in the hospital next Monday - Friday for another round of chemo.
Now I will tell you about Connor's date with that football team. Tomorrow night (Friday), he will be the honorary captain of the Prestonwood Christian Academy football team. He is so looking forward to it! The head coach, Coach Hall, and one of the leading players, Tim Flores, are cancer survivors. Coach Hall told Tim when he was diagnosed with cancer at the age of 12 that they were in the same club - the cancer club - and with that came a big responsibility. When someone they met had cancer, they should encourage them and lift them up in prayer and support. When Tim heard about Connor, he approached the coach with this idea about the football team. Now, the whole team is praying for Connor and some of the players have even shaved their head to make Connor feel better. Connor got to meet the whole team yesterday and show them his 3 tattoos.
I know that God put Coach Hall and Tim in Connor's life for a reason. They are great examples for Connor to follow. When he is well, Connor will want to do the same things for others like these two people have done for him. We want to thank the whole football team for taking such an interest in a 4 year boy and praying for him faithfully. Although Connor is going through such a difficult time, I pray daily that Connor will not remember the bad stuff. I hope he learns from this experience how Great God is, how to pray for others faithfully and how to serve others. Tait and I have learned this from the examples of so many of you.
"Is it not to share your food with the hungry and to provide the poor wanderer with shelter - when you see the naked, to clothe him, and not to turn away from your own flesh and blood? Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you and the glory of the Lord will be your rear guard. Then you will call, and the Lord will answer, you will cry for help and he will say 'Here I am.'" Isaiah 58:6-9
Thanks for your continued prayers.
Joy
Monday, September 19, 2005 9:46 PM CDT
I wrote so much last week and I wanted everyone to get a chance to read it, so I waited until today to write a new update. Connor is doing well. He is not throwing up anymore. He finished that last Monday and he's eating so much now. Yeah!!!! We need him to regain his weight and strength for the upcoming chemo and transplant. His blood counts should be coming back up now. We will check again tomorrow. Last week, he had a blood transfusion and a platelet transfusion, so he should be good this week.
He went back to school today. He should get to go again on Wednesday. He was so glad to see his friends and teachers. His favorite part of the day was eating Ann Rene's birthday cookie cake. His stamina is getting better, but his mood swings are still apparent. I sometimes wish for my old Connor back - the one that is so consistently happy and content. Today at dinner, he said he wished he didn't have the tummy bug (that's what he calls his cancer) for just one day. He wants to take a break from the hospital, shots, medicine, vitamins, etc. He's never really complained about it before. I told him that there are so many people out there praying for just that very thing - that he would not have the "tummy bug" anymore. We are all learning patience here.
It reminds me of a devotional from "On the High Road of Surrender" by Frances J. Roberts.
"Be not weary in waiting for the Lord. Do not be disheartened if it seems to be delayed in coming. Lo, He is not slack concerning His promises. His times are not your times, and His patience endures forever. He can wait and not be anxious. While you see delay, He sees His will being performed in ways not discernable to your eye. What you see as standing still, He sees unfolding. It is like the rose that opens, but the motion is imperceptible to the human eye.
Rest in Him. He is surely bringing to pass His perfect will in and through the entire situation, and it is doing a unique work in many different lives, as they are touched and affected by the action.
Be still and wait. You shall know that the Lord your God, He fights for you, and He will do a miracle before your eyes if you will but trust Him completely and cease to be anxious. Rejoice! Let this be a day of gladness and of jubilation for our God is mighty, and His hand is working a victory!"
She based this on Psalm 31:15-24 Verse 24 says "Be strong and take heart, all you who hope in the Lord."
Connor is having several tests done this week, including a cat scan on Friday. Please pray that the results of the cat scan will impress all the doctors. He will have his new central line put in on Thursday. Please pray that surgery goes well and he recovers quickly from it, because he has a date with a football team on Friday. I'll tell you more about that on Thursday.
Thanks again for your prayers and encouraging words. Tait and I feel overwhelmed by your generosity and faithfulness.
In Christ,
Joy Cruse
Tuesday, September 13, 2005 9:20 PM CDT
As Connor was waiting for a blood transfusion yesteday at the clinic, I had a chance to speak with the bone marrow head nurse. She updated me on their plans for Connor. The doctors are ready to "get the show on the road." The following plan is all based on the assumption that Connor stays healthy and his blood counts are high enough to continue with the next step. The dates may change based on his health/counts.
Next week, the doctors will be running several tests on Connor to make sure he is strong enough to endure the bone marrow transplant and make sure he has no infections. They will check several things - hearing, heart, kidneys, etc.- to get a baseline so we will know if the chemo during transplant has damaged any of these organs. We will also do another cat scan to check on his tumors. As long as the tumors are still shrinking, we will proceed on to transplant phase. The chemo he undergoes during transplant should destroy all the remaining cancer. He does not have to be in remission to go to transplant. News to me!!
Next Thursday, Connor will have another surgery to replace his central line because the doctors put in the wrong one. I'm not sure how that happened!?!
The following Monday, the 26th, we will start harvesting his stem cells from Monday until possibly Thursday. We will be in the out patient clinic for six hours each day until we have harvested enough stem cells. He will then be given time to recover becauce he will start his first bone marrow transplant on October 10 or 11.
For 5 days, he will undergo severe chemo which will kill the cancer, but also kill many good cells. His bone marrow will mostly be destroyed, so he will be given his own bone marrow back after the chemo is complete. They call this a stem cell rescue, because he would not be able to generate any red blood cells, white blood cells or platelets without being given new stem cells which are in the bone marrow. Our stay in the hospital will continue until his blood counts have recovered and he is able to keep food down and digest it. This stay is approximately 3-4 weeks.
We will get about a month off, until he is strong enough to endure it again. This round will possibly start around December 10. This time he will get 8 days of chemo and we will stay about 4-6 weeks. His body will not be as strong the second time, so they expect him to take longer to recover.
Once he comes home, he will be home bound for 2 months while his immune system has time to recover. During this time, we will do a cat scan to see what his benign tumor(s) look like. We may be able to surgically remove them or we may have to use radiation.
Eventually, his central line will come out and we will begin the vigilant watch to make sure the cancer does not come back. Tait and I will be asking you to continue to pray for Connor during this time, because it is most important that the cancer does not come back. If it comes back, it is not curable. It is only treatable. Once he is past transplant phase, his odds are at 50%, though I know God is bigger than any percentage doctors will throw at us. I hope you don't mind a few years of praying for Connor. We will be checking for five years after transplant. With each year that passes, Connor's odds improve.
I'm standing on the promse of Nahum 1:9 for Connor. "Affliction will not rise up a second time." I'm believing that God will heal Connor completely and there will be no cancer cells present ever again in Connor's body.
Sorry, this update was so long. We have just been given this wealth of information and we wanted to share it with our prayer warriors. Thank you for your diligent prayers. I know we couldn't get through this alone. We feel your prayers and God's presence constantly.
Please pray that Connor will regain his strength to endure this upcoming transplant. "He gives strength to the weary and increases the power of the weak." Isaiah 40:28,29
Pray for Tait and I to have endurance, strength, courage and faith during the next few months. Although I am very glad to be moving forward with this next phase of treatment, I admit many aspects of the dual transplants scare me. "The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged." Deuteronomy 31:8
Thanks for your prayers.
JOY
Saturday, September 10, 2005 3:00 PM CDT
We got the final report back from CA yesterday and it confirmed the intitial report that his bone marrow is clean. Praise God!
"Make a joyful noise to the Lord, all you lands! Be thankful to Him, and bless His name. For the Lord is good; His mercy is everlasting, And His truth endures to all generations. Psalm 100: 1,4,5
Our next step is to harvest his stem cells for his future bone marrow transplant. We will take a small break from the chemo, while we work to get his stem cell counts up for the harvest. I will be giving him the neupogin shots at home to boost those stem cells. It will be at least 3 weeks until we can harvest the cells. His body needs time to rebuild the stem cells that were destoyed during the chemo and time to build an extra amount for the harvest. Because Connor needs 2 transplants, we may need to harvest his stem cells twice.
I'm not sure what our next step will be after the first harvest. The doctors will be gathering info on Connor over the next week or so to decide what our new game plan will be. They are doing a lot of bloodwork and they will need to do another cat scan to see how well his tumors are shrinking. I'm not sure how much more chemo he will need before he can begin his transplants. These tests will shed light on our new road map.
Please pray that Connor will start feeling better. He is still throwing up and he is not eating much. He's very tired and cranky. This last round of chemo has definitely taken a toll on him.
"Call unto me, and I will answer thee, and show thee great and mighty things." Jeremiah 33:3
Wednesday, September 7, 2005 1:00 pm
We are home from the hospital. Round five is complete. He's still feeling a little puky and tired. He seems to have a better appetite today and he only threw up once. Last time he had this medicine, he threw up for a week once he got home. I'm praying that the effects of the chemo drugs will not last as long this time. Last week at this time, he was riding go-karts with all of us and playing laser tag. What a difference a week can make. Please pray he bounces back quickly this time.
We should know the final report on his bone marrow by Friday, when we go to the clinic to test his blood counts. Praise the Lord the initial findings were that his bone marrow was clean!!!!!!!
We want to thank all of you for your faithful prayers. I know God is healing Connor because of your faithfulness. Your prayers are moving mountains for Connor. It reminds me of the words of a praise/worship song "The prayers of a righteous one can move mountains and I need a mountain moved. I need a mountain moved." Also, we appreciate all your entries on the website. Your words are so encouraging to us and it makes us realize we are not alone in our prayers for Connor. Tait and I know God is hearing your prayers to give us all strength, because we feel His strength, peace, joy and comfort everyday. Tait said he feels like we are pushing this bus with Connor in it and as we look closely at the bus, there are fingerprints all over it. The fingerprints are all of you helping us push this bus with the power of prayer. God is hearing our prayers and speeding this "bus" right along. Thank you so much.
"Have faith in God. For assuredly, I say to you, whoever says to this mountain
'Be removed and be cast into the sea,' and does not doubt in his heart, but believes that those things he says will be done, he will have whatever he says." Mark 11:22-23
I have met several moms who have sick children at Childrens' Medical Center. Please pray for Elisha. Elisha had a rare blood disorder and had a bone marrow transplant at 11 mos. His body rejected it and now he has graft vs. host disease. Due to complications of the disease, he now has a fungus in his lung and they are having surgery today to biopsy the lung. Pray he does not need a chest tube after the surgery and pray for complete healing for Elisha. His website is www.elishahenderson.com. I know his mother would appreciate the prayers.
Thanks,
Joy
Saturday, September 3, 2005 9:18 AM CDT
Yesterday, God game me the best birthday present ever!!!!!!!!! The doctor told us the preliminary report from the biopsy said the cancer was gone from the bone marrow!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! They will send the sample to a lab in California to check it more thoroughly. They have to be certain there is no trace of the cancer before they harvest his stem cells.
We will know the results from the CA lab by the end of next week, hopefully. At that time, they will give us a new road map and we will know what Connor's schedule will be like for the next few months. Soon, we will be able to harvest his stem cells. He may have to harvest them twice, to get enough stem cells for 2 bone marrow transplants. I'm sure the doctors will order another cat scan to see how his tumors are doing. Dr. Wright said we will do the bone marrow transplants before the big tumor in his abdomen is gone. If they have to remove it, they will remove it after the transplants. We may be getting close to the transplants.
Thank you for your continous prayers. I know God is listening to all your prayers and he is answering them. Please, continure to pray that he does well with the 5th round of chemo.
"'Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace by removed,' says the Lord, who has compassion on you." Isaiah 54:10
Friday, September 2, 2005 11:07 AM CDT
The third time is a charm. His platelets have improved enough for another round of chemo. They admitted him into the hospital yesterday morning and he had his bone marrow biopsy around noon. He couldn't eat or drink anything yesterday until the biopsy was complete (they put him under for the procedure), so he was "starving" until about 2:00 pm. He started his chemo around 4:30 pm and so far, he seems to be doing well. He should be released from the hospital on Tuesday.
This is the same chemo medication they used for the first round and it was a doozy then. He seemed to get worse once he came home. He threw up for a week at home. I know Connor is stronger now, so I hope and pray he will endure the medication better this time.
Please pray for his strength during this round of chemo and also pray for good results from the bone marrow biopsy. Hopefully, we'll have the results sometime next week.
"God is our refuge and strenth, a very present help in trouble." Psalm 46:1
In Christ,
JOY
Tuesday, August 30, 2005 12:47 AM CDT
We went to the clinic to check Connor's blood counts and his platelets are still too low to be admitted for chemo. They have doubled since last Friday, from 16,000 to 33,000, but they are still not high enough. They should be above 75,000 to start the chemo.
Today, the nurse told me that the new medicine I am giving him (neupogin) increases red and white blood cell production, but it slows the production of platelets and can even destroy platelets. Before this last round, Connor was getting one neulasta shot at the clinic after each round of chemo. This time they switched us to this neupogin (a daily shot at home for 2 weeks), which is better for getting him ready for the stem cell harvest. This is the reason his platelets have had a hard time this time. The last shot of neupogin that I gave him was Sunday, so his platelets should be reproducing quickly now. They are hopeful his counts will be ready Thursday or Friday. We will try again Thursday.
Please pray that his platelets will be above 75,000 and we will be able to start the fifth round of chemo Thursday. Thank you for your continuous prayers.
"Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." Lamentations 3: 21-23
God bless you all,
JOY
Tuesday, August 23, 2005 9:11 AM CDT
Friday, August 26, 2005
We just got back from the clinic. Connor's platelets are not high enough for another round of chemo, so he was not admitted today. His platelets have improved, but not enough for the chemo. His red and white blood counts are very good. We will go back to the clinic Tuesday to try again. The doctors feel his platelets should be good enough by then to be admitted for his fifth round.
He will have another bone marrow biopsy before his chemo starts. Pray the cancer in the bone marrow is gone. If the cancer is not gone yet from the bone marrow, the doctors feel this fifth round should get rid of it.
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Phillipians 4:6-7
Monday, August 22, 2005 10:38 PM CDT
Today, Connor and I went to the clinic, which is at Children's Medical Center. We go there every Monday and Friday to get his blood counts checked. We will have to go back tomorrow to get a blood transfusion and a platelet transfusion. His red blood count and his platelet count were very low. Please pray that the transfusions will boost his counts back up, so that he can start his fifth round of chemo on Friday.
It is amazing how God is keeping him so strong even when his counts are low. He should be so tired, because his red blood count is low. Not Connor!!
On Saturday, we went to Aerialworks Gymnastics' Grand Opening in Mesquite (Uncle Tom's & Aunt Christie's gym) and he spent two hours playing and running around on all the equipment. He didn't even want to stop and eat. With his platelet count so low, he should be having bloody noses or bruising and he has not had one bloody nose. Praise God for his protection and strength during this time.
Connor had a great week. He went to school all last week and had a great time. He loves his teachers and his class. We went to "Purple Cow" for dinner last Friday with his girlfriend, Mollie Claire, and her family. Then, we all went to the movie theater to see "Valiant." On Sunday, several of the deacons at our church prayed for Connor and he sat so still while they prayed over him.
"Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith will save the sick, and the Lord will raise him up." James 5:14
Thank you, Eddie Caldwell, for setting that up for us.
Also, thank you to Charisse and Glenn Boisbrun and their sons, Grant and Griffin. For their birthday party this year, the boys decided to have their friends donate money to Children't Medical Center instead of receiving toys for themselves. They raised almost $1500 that they will donate to the hospital in Connor's name. They are a true example of "it is better to give than receive." Thank you for your unselfish generosity, Grant and Griffin.
"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit."
Romans 15:13
Thanks again,
JOY
Monday, August 22, 2005 10:38 PM CDT
Today, Connor and I went to the clinic, which is at Children's Medical Center. We go there every Monday and Friday to get his blood counts checked. We will have to go back tomorrow to get a blood transfusion and a platelet transfusion. His red blood count and his platelet count were very low. Please pray that the transfusions will boost his counts back up, so that he can start his fifth round of chemo on Friday.
It is amazing how God is keeping him so strong even when his counts are low. He should be so tired, because his red blood count is low. Not Connor!!
On Saturday, we went to Aerialworks Gymnastics' Grand Opening in Mesquite (Uncle Tom's & Aunt Christie's gym) and he spent two hours playing and running around on all the equipment. He didn't even want to stop and eat. With his platelet count so low, he should be having bloody noses or bruising and he has not had one bloody nose. Praise God for his protection and strength during this time.
Connor had a great week. He went to school all last week and had a great time. He loves his teachers and his class. We went to "Purple Cow" for dinner last Friday with his girlfriend, Mollie Claire, and her family. Then, we all went to the movie theater to see "Valiant." On Sunday, several of the deacons at our church prayed for Connor and he sat so still while they prayed over him.
"Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith will save the sick, and the Lord will raise him up." James 5:14
Thank you, Eddie Caldwell, for setting that up for us.
Also, thank you to Charisse and Glenn Boisbrun and their sons, Grant and Griffin. For their birthday party this year, the boys decided to have their friends donate money to Children't Medical Center instead of receiving toys for themselves. They raised almost $1500 that they will donate to the hospital in Connor's name. They are a true example of "it is better to give than receive." Thank you for your unselfish generosity, Grant and Griffin.
"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit."
Romans 15:13
Thanks again,
JOY
Tuesday, August 16, 2005 5:52 PM CDT
We finally got the report from the bone marrow biopsy late on Friday, but my computer was not working until today. Sorry for the delay. The doctor was pleased with the results. They had a good sample from his bone marrow this time, so they feel like this sample is very accurate. The cancer is reduced from 50% down to 30%. This reduction came with only one round of chemo. The doctors are hopeful that the cancer will be gone in his bone marrow after his next round of chemo at the end of this month.
When the cancer is gone from his bone marrow, they can harvest the stem cells from his bone marrow to get ready for the transplant. He will not have his two transplants until the tumors are also gone. I'm guessing they'll do another cat scan in September to see how the tumors look.
The doctors are still pleased with how Connor looks and feels. He is doing great! He is still enjoying school. Luckily, his blood counts are still good, so he has not missed a day of school.
Thank you again for your faithful prayers. I know they make all the difference for Connor and our family. Please continue to pray that the cancer will be gone from his bone marrow after this next round. That would be a huge success for Connor.
"My soul waiteth for the Lord... for with the Lord there is mercy, and with Him is plenteous redemption." Psalm 130:6-7
"Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." Hebrews 4:16
Thursday, August 11, 2005 9:57 AM CDT
YOU CAN'T KEEP A GOOD BOY DOWN!
Connor finished his fourth round of chemo at 3:30 this morning, he was awake at 6:00, we left the hospital at 6:30, were home by 7:00 and he made it to his first day of school by 8:00! He's one tough little boy!
Philippians 4:13
I can do all things through Him who strengthens me.
We appreciate all your thoughts and prayers,
Tait
Wednesday, August 10, 2005 8:04 PM CDT
This is Aunt Christie writing. Joy's home computer continues to have problems so she can't update. Tait has been so busy between work and the hospital he cannot update lately either.
Connor is tolerating this round of Chemo pretty well. He had some nausea at the beginning, but is on continuous anti-nausea medicine so he doesn't feel like throwing up...just a bit sleepy. Since we are dealing with a Super Hero, ConCon, it IS hard to tell when he is uncomfortable or in pain.
We still do not have the bone marrow percentages but will post them immediately when we do. We did learn, for those that missed the report, that cancer was still in the marrow, but pray it shows only a small bit of cancer...that it's nearly gone. They use Connor's bone marrow for the bone marrow transplant. They just need some clean cells!
Connor goes home tomorrow (Thursday) and he is really looking forward to it. He hardly ever complains anymore. The entire process is not scary anymore. He knows the nice doctors and nurses at Children's are helping him to get well. Children with cancer grow up so fast.
We had a super family reunion on Saturday and will post some photos when we have a chance.
Thank you for your prayers, thoughts, and messages left in the guestbook. We read them all and it brings a great deal of comfort to know others are walking this road with us.
Saturday, August 6, 2005 7:55 AM CDT
Yesterday, we got the results of the bone marrow test. The cancer is still in the bone marrow. We don't know the amount of cancer in the bone marrow yet. The initial report only gives a positive or negative result. It takes a little while longer to get the percentages. Our doctor will give us that report Monday. Please pray that the cancer is dramatically reduced and there is only a small percentage left in the bone marrow. He will start his fourth round of chemo on Monday. Pray that it completely wipes out the rest of the bone marrow cancer. The doctors would really like to see it be gone after this next round.
We were initially dissapointed, but I know God's timing is perfect and he has a wonderful plan mapped out for Connor. I found a quote that I like in a devotional book my friend, Laura Wright, sent me. "In tenderness Thou hast brought me to this place, and surely in gentleness Thou wilt minister to my needs. I shall not be disheartened if I may but look upon Thy face. I may not receive a speedy answer to my prayer, but while the light is withheld, I shall trust Thee in darkness." This is from "On the Highroad of Surrender" by Frances J. Roberts. He also says, "There are many pitfalls in the journey of the soul. It is not given you to know in advance all the hazards, but it is My intention to show you clearly where to set your foot as you take each step. "
"The steps of a good man are ordered by the Lord." Psalm 37:23
On another note, Connor and his siblings had a great (and hot) time in San Antonio. He loved the Roadrunner ride and the Log ride at Fiesta Texas. He loved Shamu and the ski show at Sea world. They won lots of stuffed animals when they played the games at Fiesta Texas and they all got lots of tattoos. Connor has a "Jesus" tattoo on the back of his bald little head. He's so proud of it and he loves to show it off. On Tuesday, he was pretty sore from the surgery, but by Wednesday he was feeling much better. He is such a tough little guy.
We have a big "July Birthday Party" scheduled for today. Tait's family from the Houston area came and so did my family from Oklahoma. We're having a big family reunion. Connor is so excited.
Thanks again for your faithful prayers and please continue to pray about his bone marrow. We know God hears our prayers. "Therefore I say to you, whatever things you ask when you pray, believe that you receive them, and you will have them." Mark 11:24
JOY
Sunday, July 31, 2005 10:04 PM CDT
Well, tomorrow is a big day. Connor will have his bone marrow biopsy in the morning and they will also put the "central line" back in his chest. Thank you so much for you continuous prayers about his bone marrow. We pray that we will get a clean report on Friday. We will let you know as soon as we find out the results.
Also, I will be bringing a truckload of toys to the hospital tomorrow. Many of our friends, several from our bible study and church, donated money to buy toys for the sick children at Children's Medical Center. Several of our children showed up at "Toys R Us" early Saturday morning to pick out the toys. What a great experience for our kids to buy toys for other needy kids. Thanks to Kelli and Patrick Matthews for planning this wonderful gesture.
We went to see Papa Burt today in the hospital today, because he's getting a pacemaker put in his chest tomorow morning. Connor and Papa Burt will be undergoing surgery at the same time. We pray his surgery will go well, too. We spent the afternoon swimming, because swimming will be much more difficult when Connor's central line is put back in. Our cousins, Mitch and Lexie, also came by to see us.
We plan to take a trip to Sea World and Fiesta Texas in San Antonio this week. We pray the trip goes well for Connor and we have no unexpected surpises. We'll add a new entry Friday when we return and get the results of his biopsy. Thanks again for all your faithful prayers.
"He was wounded for you transgressions, He was bruised for our iniquities; the chastisement for our peace was upon Him, and by His stripes we are healed." Isaiah 53:5 I'm claiming that verse for Connor.
JOY
Tuesday, July 26, 2005 9:50 PM CDT
I'm sorry we have not updated Connor's website in awhile. My computer has not been working for 2 weeks and Tait/Christie have been out of town since Saturday.
Connor is doing great. His blood counts have all come back up. The transfusion helped his red blood count. Also, his white blood count has come back up, which means his immune system is now able to fight infection. Thank you for your faithful prayers in regard to his blood counts. God has answered those prayers. Continue to pray for a clean bone marrow biopsy Monday, August 1. We will know the results by Thursday.
Connor has been very active for the last couple weeks. Even when his red blood count was low, he was running around, playing chase and wrestling with Daddy. He went to a birthday party Sunday and then went to play with his three cousins, Chris, Cole and Chase at their house. He visited his old pre-school today and we spent the evening at Ghetti town (an upgraded version of Chucky Cheese). His favorite part was the bumper cars.
The doctors are very encouraged by how good he looks and feels. I feel that God is definitely giving Connor an abundant amount of power/strength to fight this cancer. He is carrying Connor throught this whole ordeal. "Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness." Isaiah 41:10
Thursday, July 21, 2005 2:07 PM CDT
Hello
Joy and I want to let you know that Connor is doing well and is feeling great. He got a blood transfusion on Tuesday. Continue to pray that his white blood count will go up. He is excited that our friends the Turners and Hudsons are coming over tonite.
Our prayer request are:
White Blood Count to go up.
No fever with the new blood received
That the Blood marrow is clean on August 1
No mouth sores
The next CT Scan is showing more improvement
No infections
Thank you,
God Bless you
Tait & Joy
Tuesday, July 19, 2005 9:10 AM CDT
Good morning,
Connor's blood counts are very low. Please pray that his white blood count,his red blood count, and platelets go up. He is going in today for a transfusion. The chemo which started ten days ago is bringing these counts down. This is normal with this regimen, but please pray.
Connor's spirit is great and he is doing fine. He ate at On the Border with Grandpa Burt last nite. He wore his Batman suit and Carson wore his Spiderman suit with many looks from the patrons.
God is good. Thanks for your prayers.
Tait
Monday, July 18, 2005 10:34 AM CDT
Good Morning,
Connor had a great weekend. He is feeling great and looking great. He went to dinner at our friends the Riley's on Friday nite, and ate all his steak and fruit as he says. On Saturday, he went to the circus and had a wonderful time-his favorite was the motorcycles in the cage. He bought a new sword for both Carson and himself at Toy R Us and played all day without trouble.
Sunday, he went to church and then we went to our friend's the Matthews neighborhood pool not expecting a surprise party for Connor! There were about forty people out front of the pool waving Connor signs and tshirts that say Con Con the Superhero with his face on it. He was so excited about the party, swimming, BBQ, and a $1500 gift certificate they gave him to have his own shopping spree in the Frisco Toys R Us with some friends. He will be buying toys for Childrens Med. Center of Dallas toy and play room so others can play while in the hosptial.
Then, finally we went and saw the Fantastic Four which our whole family loved. Hope all you have a great day.
Tait and the family.
Friday, July 15, 2005 7:25 AM CDT
Good morning,
Happy Friday.
Connor is home and doing great. He is happy to be sleeping at home and eating "Olive Garden". He bought some Batman books yesterday at the bookstore, and Daddy is reading Spiderman comics that our friend Cindy McComb gave him including some that are very vintage. We had a blood drive at my office yesterday with Carter Bloodcare and it was very successful. Over 45 pints of blood and alot of support for Childrens Hospital.
Connor's health and spirit are great. He loves the green bracelets that are similar to Lance Armstrong's yellow ones.
If you would like a Connor bracelet let me know at taitcruse@hotmail.com. They are lime green and say "Connor's Prayer Warrior". We have raised alot of money for Childrens Medical Center of Dallas Social Fund with Tshirts and these bracelets. They are min.$3 each with all the money going to help others.
Joy and I are so blessed to have our beautiful three children and one on the way. These last 60 days have been very hard and trying. However, we are rejoicing that with all the bad news and there was alot. We are blessed to have all the support, prayers, meals, gifts, and friends like you. We praise God that the Cancer has stopped growing, it is pulling back and the bone marrow shows 50%improvement and that our health coverage will cover the second bone marrow transplant.
II Samuel 7:18
Then King David went in and sat before the Lord and he said "Who AM I" O Lord God and what is my house and thou has brought me this far.
Love the Cruse's
Tuesday, July 12, 2005 9:30 PM CDT
Hello to All!
Connor is coming home tomorrow (Wed.) he had his last chemo. this morning and did great. He is feeling very good for having three chemo treatments a day since Friday. Today he had grilled cheese sandwiches, and played bingo all day with cousin Lexie. He is so excited about his new Spider man costume that Blake and Lori Brawner got him. He now can play wear it and Carson will wear the Batman. Thanks to the Brawner's for both.
He loves his bingo game and Spongebob movie, also Old Maid and Playstation. We hear at the Cruses' in Frisco are so excited to have him home. He wants to go see the Fantastic Four tomorrow when he gets home. Our friend Karen painted a wildlife scene on his wall and a picture of him, and it looks so real. He is really pumped about that.
Thanks to our new friends and neighbors in Frisco, as well at our new church Prestonwood as well as all our family, friends and associates, and those we have never met! We thank God for his progress, his health, his energy, his lively spirit and of course your prayers, support, food, carpools, gifts, pats on the back and emails. We Praise God for the last 60 days for sustaining us.
Love the Cruse's
Thursday, July 7, 2005 8:20 AM CDT
NOTE ADDED MONDAY: Connor has finished his third day of chemo and he is doing well. He seems to be tolerating this medicine better. I don't know if the side effects of this chemo medicine are less harsh, or it could be that his body is stronger this time and he can withstand the side effects better. Either way, we are grateful that he doesn't have very much nausea with this medicine. He just seems to be tired and a little bit cranky. We should be coming home Wednesday. Thanks again for your prayers and visits to the hospital. "'Because he loves me,' says the Lord, 'I will rescue him; I will protect him, for he acknowledges my name. He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation.'" Psalm 91:14-16
NOTE ADDED FRIDAY: CONNOR'S BONE MARROW BIOPSY RESULT SHOWED A 50 PERCENT REDUCTION IN CANCER. THIS IS A GOOD RESULT. IT WILL BE TESTED AGAIN BEFORE HIS NEXT ROUND OF CHEMO ON AUGUST 1. HIS NEXT ROUND OF CHEMO WILL BE DELAYED UNTIL WE GET THE RESULTS OF THIS BIOPSY. IF THE BONE MARROW IS CLEAN, THEY WILL HARVEST HIS STEM CELLS IMMEDIATELY FOR CONNOR'S EVENTUAL BONE MARROW TRANSPLANT. PRAY FOR A CLEAN REPORT. "LORD, IF YOU ARE WILLING, YOU CAN MAKE ME CLEAN. AND JESUS SAID THESE SIMPLE WORDS, 'I AM WILLING, BE CLEANSED.'" MATTHEW2 8:2,3
Tomorrow Connor will go back to the hospital for round 3 of chemo, so we are planning to enjoy our last day at home. He went to the Rangers game last night with Daddy and his Bible Study friends. He came home with three baseballs and his tummy was full of baseball food. My friend, Karen, is painting a mural for Connor on his bedroom wall. He can't wait until it's finished. He especially wants to see the bear, moose, eagle and camping tent on the mural.
We still do not know the results of the bone marrow biopsy. As soon as we find out, I will post the results. I find that I am not as anxious about the results as I was last week. God is teaching me (through his Word) that God has an ultimate plan for Connor and He has perfect timing for everything. We will "stay the course" as our friend, Jack Shaw, says. "Let us run with perseverance the race marked out for us." Hebrews 12:1 "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1:2-4
I like to add scripture to my updates, because I have found that God's Word gives me comfort and strength. "My son, give attentiion to my words; incline your ears to my sayings. Do not let them depart from your eyes; keep them in the midst of your heart; for they are life to those who find them, and health to all their flesh." Proverbs 4:20-22 God's word will be life and health to Connor.
"Rejoice in hope, patient in trouble, and steadfast in prayer." Romans 12:12
Thanks again for all your prayers,
JOY
Tuesday, July 5, 2005 7:46 AM CDT
www.connorcruse.com
Happy Fouth of July!
We here at the Cruse home had a great day. So much to be grateful for in this great Country. Connor and Carson and Mackenzie had a great weekend together as a family. They saw "Herbie" went to the Stonebriar Mall and went swimming. Connor loves his Jet Ski for the pool. He can ride all over without getting wet. He pretend it's a warboat and he hunts down Daddy and Uncle Tom.
Last nite he ate over 15 shrimp and popped firecracker's and sparklers. Connor also got some new clothes at Nordstrom's-his favorite is a lobster tshirt and swimsuit. We finished the nite with a big fireworks display put on by the city of Frisco right in our front yard.
Connor is feeling and doing great. Please Pray for the chemo to keep working and that this weekend all goes smoothly for this five round treatment.
In Christ,
The Cruses'
Saturday, July 2, 2005 3:25 PM CDT
Happy Satuday!
Connor came home yesterday afternoon and started playing right away with his sister and brother. Then he wanted to go on an "adventure" on his power wheels motorcycle. After that he went to Red Lobster and ate so much and loved everyminute. He is doing so great. Joy is giving medicine at home and has become quite a nurse. Connor went with us to workout and then ate at
Grandys. His weight is doing wonderful and his spirits are even better. He is wanting to see The Fantastic Four and go see fireworks. Right now, he is at the mall with his mom and sister.
Tomorrow we will go to church and swim. Thanks for the prayers, meals, support, and prayers -they are working!
Love Tait
Tuesday, June 28, 2005 10:03 PM CDT
NOTE ADDED WEDNESDAY: Connor has a fungus infection in his central line and was unable to leave the hospital today. A lot of tears all around. He is on anti-fungal medication and will go home on Friday. This pushes his next chemo round to July 10th. Pray waiting does not affect the power or strategy of the chemo!
Hello--
Here's our CT scan results from yesterday (the first CT scan since the cancer was diagnosed and Connor underwent two rounds of chemo).
The tumor has shrunk, as have the various lesions elsewhere in his abdomen. They haven't shrunk a tremendous amount, but they ARE shrinking. The doctors told Tait and Joy this is the result they expected.
They do not see any cancer in any organs but the spots seen on the bone were cancer and these look good now. One rib bone has a hole in it from the cancer. Connor had a bone scan today and we'll get the results perhaps tomorrow.
It is tempting to get disheartened since the cancer is not gone altogether. We prayed for a miracle. However, according to the doctors it takes a miracle just to stop this cancer and begin to shrink it. It's that aggressive. So we give thanks and continue to trust God.
Connor's blood infection appears to be gone, we'll know for sure tomorrow but it looks as if nothing is growing on the culture. If this is the case, Connor will go home tomorrow and come back to the hospital Friday to begin an seven day chemo round, a long and important one.
Thanks for standing with us on this journey and for being such enduring prayer warriors.
Aunt Christie
Monday, June 27, 2005 12:58 AM CDT
Okay-
Everybody pray!
Sometime this afternoon Connor will have a bone scan, a CT scan and a chest X Ray done. Bone marrow will be checked friday. This will be our first look to see if the chemo is having a positive effect. Please pray for a very good report!
Also, Connor is in the hospital right now because he has had a blood infection. We're hoping it is not involve his central line. He seems to feel wonderful. He will stay in the hospital at least two more days until the blood culture done today has had 48 hours to grow and give us info. If the blood culture is fine, then Connor can go home or he can stay and start his next round of chemo (scheduled for July 1). If his blood culture shows infection, Connor has to stay in the hospital to continue on antibiotics.
Continue to pray. One thing I do see that is the result of the hundreds of individuals praying for Connor is how he feels. He seems to feel wonderful. Lots of smiles and great energy.
Keep it up, he feels your love and care!
Christie
Sunday, June 26, 2005 10:31 AM CDT
Hello to all--
Connor's doctors think he does have a blood infection of some kind. They hope it is not an infection of his central line, which can become life threatening in a matter of hours. So, for the time being, Connor is back in the hospital until the cultures reveal what kind of infection we are dealing with.
You'll be glad to hear Connor is not acting sick! Connor is energetic and cheerful but a little bummed about having to go back into the hospital. Uncle Tom spent the night with him Saturday and they played army until midnight.
Connor's stay at the hospital could be as long as ten days if his central line is infected, or as short as 48 hours if they find it is something easily treatable.
Prayer warriors: Please continue to lift Connor and his family up in powerful and persistent prayer.
Aunt Christie
Friday, June 24, 2005 10:04 AM CDT
Update from Aunt Christie,
I'm leaving Tait's most recent update on the page because it hasn't been here long, BUT--WE NEED YOUR PRAYERS.
This evening Tait and Joy took Connor back to the hospital because he developed a fever of 101.6. He's had the sniffles all week, so pray this is just a response (unusual but not unheard of) to the chemo he received today. Connor's white count (which fights infection) has just recently risen to 10,000, so we hope it is soon enough to fight any infection he may have. His red cell count is low, at 7.1. Needs to be above 10. Platelets are good. It's time to pray, pray, pray!
Happy Friday Morning,
Remember the other web site. www.connorcruse.com
Connor is going in right now to childrens to get a quick chemo shot and go home. He is going in next week for six days to get tested and five rounds of chemo.
Please pray that the ct scan and bone marrow are showing signs of response to the treatment.
Last nite, we went out to the backyard and played dodge ball and Connor wore is new Batman suit from our friends Lori and Blake Brawner and Carson wore is Powerranger suit. Connor had more fun hitting me with the ball. His energy is higher than weeks before the discovery on May 15. We praise God for his energy and his fight and his loving spirit. Thank you to all who support us in this.
Tait
Wednesday, June 22, 2005 6:59 AM CDT
Well Good morning,
We have another website also to check on Con Con: www.connorcruse.com
Connor is doing great after our scare over the weekend re: his blood counts. He went on a "adventure" and went to the Land Rover Store and looked at the new ones and rode on their course. He loves Daddy's "hunting" car which is a Land Rover-so he was tickled to go last nite. He is doing so much better and is in good sprits.
Please pray for his CT Scan and bone marrow check next week. Our prayer is this tumor is gone or shrunk to the size to get it out. Also, if is marrow is clean-they will start to remove the stem cells for the transplant. Also, pray for the five days of chemo coming that he stays strong.
Thanks for all your prayers, love and support!
Tait
Monday, June 20, 2005 4:03 PM CDT
As you know, Connor's white and red blood count were severely low this weekend. He got a blood transfusion and his red count is better now. All weekend he had a low grade temperature, which we had to watch very closely. If it rises above 100, it could be a sign of infection and we would have to bring Connor to the ER. Last night, his temperature rose to 99.9 at about 10:30. Tait and I prayed fervently for the fever to come down and we prayed and read several scriptures. "If two of you agree on earth concerning anything that they ask, it will be done for them by My Father in heaven." Matthew 18:19 By midnight the fever had came down to 98.9 and he slept well the rest of the night. This morning when he woke, his fever was gone. He has been without fever all day. God is good and he answers our prayers!!!!
Connor felt good enough today to sell lemonade at his lemonade stand at the Chip Moody Golf Tournament (which benefits Children's Medical Center.) Channel 8 News covered the story about the lemonade stand at the 12:00 news. Watch again at 5 and 6 pm and it may be on again. Our neighbors, Dane and Holli Citelli, built the lemonade stand to raise money for the Children's Medical Center in Connor's name. I thank God daily for the support and prayers of people like Dane and Holli.
JOY
Friday, June 17, 2005 5:49 PM CDT
Connor got the results of his blood work today and his white and red blood counts are low. His white blood count should be between 5,000-10,000 and it is at 20, so he is at risk for infection. Anything below 500 is considered high risk. If he would get an infection, his body would not be able to fight it. We need to pray that his white blood count will come up very quickly. Last time, it went from 5000 to 9000 in 2 days, so we know they can rise quickly. Also, pray that he will not be exposed to any germs and get an infection. We need God to put a hedge around him and protect him until his counts can come up. "You are my hiding place; you will protect me from trouble and surround me with songs of deliverance." Psalm 33:7
His red blood count is 6.6 and anything below 8 is too low. We may need to take him in tomorrow for a transfusion if he starts showing signs of pale skin or lips, or severe fatigue. His activity does not seem to match up with his counts. He is running around and playing with his brother. Pray that his red blood counts increase quickly also. When you have low red blood counts, you will feel tired, weary, and weak. It reminded me of this verse. "...but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31 Please pray that for Connor.
For those of you who live in Dallas, check the Dallas Morning News on Monday. Look for the article (possibly on the front page) about the Chip Moody Golf Tournament. Tait's office is sponsoring the tournament and all the proceeds go to Childrens Medical Center of Dallas, which is Connor's hospital. Part of the article will be about Connor, neuroblastoma and our experience with Children's Med. Ctr. We spoke to the reporter about our faith, the support of our family and friends and all of your prayers. Thanks again for all your prayers!!!!!
JOY
P.S. Please check out www.connorcruse.com
Wednesday, June 15, 2005 8:15 PM CDT
NEW PHOTOS ON THE PHOTO PAGE!
Hello Everyone,
Again, thank you for your support and prayers! We are moved everytime someone signs on. Well it has been one month as of today and it seems like a year!
Connor is doing great. Since his last treatment he had Hibachi shrimp on Saturday and lots of veggies. On Sunday, he went to Prestonwood for church and had a nap with Daddy -then went on a cookout at Dane and Hollys with his buddies Cade and Sydney. On Monday, he played all day and nite, and on Tuesday ate like a "hog" at Red Lobster -"with lots of protein as he says which builds muscles" his eating is excellent and energy is out of this world.
His buddy Cade and his Dad- our neighbor Dane shaved their heads, so Connors little brother Carson did also.
Today we just got back from some frozen custard and playing in the yard. His energy is better now than two weeks before May 15 when he went in.
Please pray that his treatment Friday goes well and he stays strong. We will do a CT Scan on July 1 and a bone marrow check too. Lets all pray that it is shrinking.
Again, we love all of you, and your support and prayers are keeping us going strong and we Praise God for all of you. On Friday we will have another website up which is www.connorcruse.com
Love Tait and Joy, Mackenzie, Connor, Carson
Wednesday, June 15, 2005 8:15 PM CDT
Hello Everyone,
Again, thank you for your support and prayers! We are moved everytime someone signs on. Well it has been one month as of today and it seems like a year!
Connor is doing great. Since his last treatment he had Hibachi shrimp on Saturday and lots of veggies. On Sunday, he went to Prestonwood for church and had a nap with Daddy -then went on a cookout at Dane and Hollys with his buddies Cade and Sydney. On Monday, he played on day and nite and on Tuesday ate like a "hog" at Red Lobster -"with lots of protein as he says which build muscles" his eating is excellent and energy is out of this world.
His buddy Cade and his Dad- our neighbor Dane shaved their heads, so Connors little brother Carson did also.
Today we just got back from some frozen custard and playing in the yard. His energy is better now than two weeks before May 15 when he went in.
Please pray that his treatment Friday goes well and he stays strong. We will do a CT Scan on July 1 and a bone marrow check too. Lets all pray that it is shrinking.
Again, we love all of you, and your support and prayers are keeping us going strong and we Praise God for all of you.
Love Tait and Joy, Mackenzie, Connor, Carson
Friday, June 10, 2005 10:14 PM CDT
Sunday, June 12 at 4:00 pm Connor came home from the hospital yesterday and he is doing great! He is eating well and his energy level is great. This round of chemo didn't have the lasting effect that the previous round had. Hopefully, it won't affect his blood counts as much as last time either. Connor will go to the clinic Thursday for an outpatient dosage of chemo, and then again next Thursday. Thanks again for all your prayers and support. JOY
Friday, June 10 at 10:14 pm This time it is Joy filling you in on Connor's progress. Tait is at the hospital spending the night with Connor, so I get a little free time while the kids are asleep. Connor did great today. He hasn't vomited since 4:00 this morning and his energy rebounded a little bit this afternoon. He actually ate a picnic with his friends from bible study and then played on the playground for an hour. Later, he played in his hospital room with some friends from our old neighborhood. The reason I tell you this is because we rejoice in every little bit of good news, and it is so good to see him get out of bed and interact with his friends.
I wanted to tell you all how grateful I am for your prayers, support, encouragement, meals, and visits. Connor especially wants to thank you for the toys you've brought him. I'm overwhelmed by your outpouring of love. It's been wonderful to hear from old friends, like friends from my hometown of Loyal, Oklahoma, friends from my old job at Centex, and friends that have moved away from Dallas. Also, I love hearing from all my new friends and people whom I have never met who continue to pray for my son. It's amazing what God's family can do when they pull together like this. I probably won't send any thank you notes for all these wonderful gestures, so I just wanted to thank everyone through the website.
I just wanted to leave you with a couple verses that have helped me.
(I'll probably add one each time I log on).
When I think about Connor and how his little body is suffering - vomiting, nosebleeds, losing weight, losing his hair, etc... I think of this verse...
"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." 2 Corinthians 4:16-18
I try to remember that we are here on earth for God's glory and Connor will be used to bring glory to God. I try to focus on that and remain grateful that God is using Connor in such a mighty way..."My grace is sufficient for you, for my power is made perfect in weakness. Therefore, I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, insults, hardships, persecutions, and difficulties. For when I am weak, then I am strong." 2 Corinthians 12:9-10
This last verse sums it all up..."And call upon me in the day of trouble: I will deliver thee, and thou shalt glorify me." Psalm 50:15
Thanks again for all your prayers. Please keep it up. I know your prayers are being heard and because of them, God is giving us peace, strength, comfort and joy. And most of all, He's giving Connor healing! God is good!
JOY
Friday, June 10, 2005 8:32 AM CDT
Good morning,
Connor is in room 410 on the eighth floor at Children's. He will be there till tomorrow afternoon. Last nite, he received three rounds of chemo and had a very rough nite with the vomiting etc. Please pray that this chemo does not damage the heart.
Joy met with the Doctor who will be performing the two bone marrow transplants. He thinks it could be as early as Sept. Please pray that the next CT Scan (to be done in early July) is showing improvement and the bone marrow is clean.
Connor is in good spirits and is looking forward to coming home and playing with MacKenzie and Carson. Thank you from our family to you and your's for your prayers, and all the support.
Tait
Thursday, June 9, 2005 7:06 AM CDT
Today Connor goes into the hosptial for two round of chemo. He will receive one today and another tomorrow, and then he goes home on Saturday. This Chemo is the one that can damage the heart. Please pray that Connor is protected from the side effects, and that he stays strong. Last nite we weighed him and he is within a half of pound of his old weight! Connor is doing great-He is in Vacation Bible School at Prestonwood and also swimming and playing all day. He is excited about the new movie "Shark Boy and Lava Girl" and wants to eat alot especially mexican food.
His hair is now falling out and he is thinking he is Michael Jordan of Space Jam and he thinks it is cool.
Thank you to all who are praying for my son, my family and our unborn child. All of us are so grateful for you and your Love. We Praise God for your friendship.prayers,notes,food,gifts, visits, etc.
Tait
Sunday, June 5, 2005 1:24 PM CDT
I apologize for the long delay in updating this journal. Twice now, I have updated this page only to have the update disappear a short while after uploading.
Connor's blood work on Friday showed great improvement in his platelet count. The transfusion mid-week helped a lot. His white cell count is fantastic, meaning his immunities are strong, Praise God! His red blood cell count is somewhat low so that's an area for prayer!
NOTE: The day Connor returns to Children's Medical Center in Dallas for a new round of chemo has been changed from Wednesday June 8 to Friday June 10.
I have purchased www.connorcruse.com and will switch over to it when I have the new website created. Caringbridge.com is a wonderful service and we are appreciative of the folks who make this website available for anyone (it's free). However, I would like to post a calendar for Connor's hospital visits and more space for photos would be nice! Besides, connorcruse.com is much easier to find. The only function I am trying to figure out how to do is the "guestbook". The guestbook is important!
Your messages on the guestbook pages are read (and reread!) by Tait, Joy, and all of our family. Your words mean many loving, caring individuals are beside us on this journey. It makes the term "the body of Christ" very very real.
Thursday, June 2, 2005 1:14 PM CDT
Connor, Joy, and Tait had a rough night. Connor has been experiencing frequent nose bleeds and they are difficult to stop. Last night, Connor's nose bled for several hours until finally the oncologists on call told Joy and Tait to bring him back into Children's.
There, Connor got a blood transfusion...his platelet count was very low.
Pray for Connor's nose bleeds to stop. Pray for peace and rest for Joy, Tait and Connor. Connor's appetite is non-stop now and we know your prayers are the reason!
Remember, Connor returns to Children's Medical Center Wednesday, June 8th for three days of chemo. Please be steadfast prayer warriors!!!
Thursday, June 2, 2005 1:14 PM CDT
Connor, Joy, and Tait had a rough night. Connor has been experiencing frequent nose bleeds and they are difficult to stop. Last night, Connor's nose bled for several hours until finally the oncologists on call told Joy and Tait to bring him back into Children's.
There, Connor got a blood transfusion...his platelet count was very low.
Pray for Connor's nose bleeds to stop. Pray for peace and rest for Joy, Tait and Connor. Connor's appetite is non-stop now and we know your prayers are the reason!
Remember, Connor returns to Children's Medical Center Wednesday, June 8th for three days of chemo. Please be steadfast prayer warriors!!!
Wednesday, June 1, 2005 10:13 AM CDT
Hi everyone,
This is Tait, I thought I would give you the update myself. Connor is doing Great! He is eating "alot" which is good since he lost over 10% of his body weight. Last nite he ate tator tots, green beans and pulled pork and lots of popcorn watching "Tom and Jerry" and "Bugs" with me.
He also went on a walk for over an hour and rode his power wheels motorcycle with the biggest grin on his face.
Please pray for his strength for next week's chemo and for his continued appetite. He is going in next Wed. the 8th for three days.
Please continue to Pray for Connor during this fight. Your prayers are working!
Saturday, May 28, 2005 9:58 AM CDT
Yesterday, Joy took Connor back to the hospital for some blood tests. During chemo it is important to monitor Connor's red blood count, white blood count and platelets. This is the time (the weeks following each round of chemo) that Connor's blood would most likely dip to its lowest point, endangering his health further.
Praise God, Connor's red cell, white cell and platelet counts were in the excellent range!
Your prayers are powerful! And more good news, Connor's appetite is better and he is not throwing up as much.
We ask that everyone continue to lift Connor up in prayer, pray for his (and his family's) health AND heart, for this battle will be a marathon, not a sprint.
Tait and Joy's hearts are filled to overflowing from the cards, gifts, email messages, thoughts, prayers and love sent their way. Words are inadequate to express what this means to them.
Wednesday, May 25, 2005 11:15 PM CDT
Connor has enjoyed being home and playing again with his little brother Carson and big sister Mackenzie. He isn't quite as active as before, he tires easily, but the smile is there and it is beautiful.
At bedtime Connor prayed for sausage, eggs, and biscuits for breakfast. He wants to eat. And he tries to eat. But much of it comes back up. Joy is taking him back to the doctor tomorrow if he can't keep food down. Pray for Connor's nausea to go away and for his body to welcome food again, starting with his breakfast wish!
Also, continue to pray for Joy and the baby due in October.
Monday, May 23, 2005 5:41 PM CDT
After eight days in the hospital, Connor has gone home for a couple of weeks!!!!!
He completed his first round of chemo and earned a break for fighting the good fight.
Pray for total healing and Connor's staying well while his immune system is compromised. Pray for peace and rest for Tait and Joy.
Sunday, May 22, 2005 8:39 PM CDT
Connor had a blood transfusion this evening...the chemo decreases red blood cell, platelet, and white blood cell production and his red blood cell count was low.
He hasn't eaten in several days, no appetite and cannot keep anything down. Pray for Connor's appetite so he can avoid getting a feeding tube.
Also, pray for this entire family. This afternoon, while parked at the hospital, Joy's car was broken into and completely gutted. The attack continues! Isn't Satan a powerful yet clumsy adversary? With this, we know with even more certainty than before that for whatever reason, Satan has selected this family to try to destroy. How he must have groaned with frustration when Tait and Joy just smiled and shrugged it off. It is of no importance. With this, they only stand more firmly.
Finally, be strong in the Lord and in his mighty power. Put on the full armor of God so that you can take your stand against the devil's schemes. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace. In addition to all this, take up the shield of faith, with which you can extinguish ALL THE FLAMING ARROWS OF THE EVIL ONE. Take the helmet of salvation and the sword of the Spirit, which is the word of God. And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the saints.
Saturday, May 21, 2005 10:10 PM CDT
Connor took a safari today, exploring the hospital with Tait, his cousin Lexie, Lexie's friend Christina, and his Aunt Pam. He said hello to other children, played with some of the toys in the playroom and explored his temporary home. Lots of smiles.
This tired Connor out so he relaxed the rest of the day.
Connor is tolerating the chemo moderately well. He isn't eating or drinking much, but this is typical and he is on an IV for nourishment so there is no danger.
There is a steady stream of friends and family stopping by to see Connor, Tait and Joy every day. The fuel this provides to keep going and stay strong is invaluable and we are so grateful.
Friday, May 20, 2005 11:25 AM CDT
No new developments at this point. Connor began his second dose of chemo last night. Each dose has a different purpose and different side effects.
Connor's treatment will mean he is in the hospital for a period of time, then home for a period of time, again and again. This schedule has been worked out by researchers and doctors as being the best known protocol at this time.
We will try to keep everyone informed as to Connor's schedule. We are looking to Monday or Tuesday of next week to bring Connor home for a couple of weeks, if he is ready. Pray that he is! He misses his brother and sister so much and he is tired of that small hospital room.
Chemo is rough, but Connor is tough!
Thursday, May 19, 2005 10:53 AM CDT
Sorry for the delay in updating. My computer crashed last night.
Yesterday (Wednesday) we learned that the cancer had spread to Connor's bone marrow. While this is very disheartening news, the doctors said they were not surprised and this is typical of this cancer. It doesn't change anything they have planned for treatment.
Connor's first chemotherapy treatment began last night around 9:00 pm. He receives another treatment tonight.
Words are inadequate to express how much Tait, Joy, and the rest of the family appreciate the prayers, toys, food, and other thoughtful efforts made during this unbelievably difficult time. The support and the love behind it are powerfully uplifting and we cannot thank you enough.
Tuesday, May 17, 2005 7:25 PM CDT
Connor's central line (on his chest, near his heart) was inserted today and bone marrow was taken from both hips. This was started around 3:00 pm and he got back to his room around 5:00. He had not had any liquids or solids since the night before so he was one hungry, irritated fellow!
They are starting chemo tomorrow, not Thursday. They were able to push the date up one day and we are pleased. We are ready to fight this thing and the sooner the better.
Continue to pray for a complete healing for Connor.
Monday, May 16, 2005 5:55 PM CDT
This is what we know at this point:
Connor has Stage 4 Neuroblastoma. This means the cancer has spread, to what degree it is not certain at this point.
Tomorrow a port will be inserted so Connor's various medicines can be administered more easily. At the same time, a bone marrow sample will be taken from his hip/pelvis.
Chemotherapy will begin Thursday.
This was one of the only digital photos I had of Connor. If you have a better, more recent photo of Connor, please email it to me (Christie). Contact info is located on this page.
Monday, May 16, 2005 4:24 PM CDT
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