History

Wednesday, April 23, 2008 12:32 AM CDT

This journal entry is a continuation of my last post. Sorry it's been so long, but sometimes it's tough for me to write here.

Please go back to my last journal entry to get up to speed.

As I said I was at a point that I had given up on God and even on His very existance. I began to ask the question; "What if mankind made up all this God and Jesus stuff as our way of just getting through this life without giving up." I mean humans have a really good imagination and there are plenty of books that have been written over the years to prove it. And even if there is a god, how do I know that we (Christians)have the story right. What makes us right and the majority of everyone else on earth wrong? These questions were tearing me apart.

I began reading up on other religions to see what others believed, Budhist, Hindu, Muslim, you name it and nothing gave me the answers I was looking for, not even my own Christian faith. The very scriptures I had been taught to turn to in times of need and sorrow, did absolutely nothing to give me comfort and that scared me and discouraged me.

Christian friends would say, "I don't know how anyone could get through this without knowing the Lord" while I wanted to say, "The Lord doesn't make this any easier." While in the hospital I remember meeting other parents that made it known to us that they were athiest whose children were fighting the same battles and all of their hopes were in the doctors and treatments and their children survived. To that I wondered, what was the point in having God on our side? I met athiest parents that lost their children and I thought well at least they could only be disappointed in the doctors and the medicine because God was never an issue for them. But I felt let down not only by the doctors and the medicines, but I was most disappointed in God, after all wasn't he supposed to be the GREAT PHYSICIAN.

Well I'm really in a sad state now, because not only have I lost my son, but I've also lost my god and everything I had come to believe and trust. And now I'm not sure where Alex is or if I will ever see him again and now I felt as though I had lost him a second time. I can't imagine the pit of Hell being any worse.

Even through all of this, I continued to talk from time to time to a god that I wasn't even sure existed. I continued to ask tough questions and read anything I could get my hands on that I thought might prove the very existence of God. I remember saying to this god that I wasn't convinced existed, "Okay God, if you are for real, I want you to prove to me that you exist, and if you do exist, I want you to reveal your true self to me. I want to know you for who you truly are and not some picture someone else placed in my head, or some god I have made you out to be. This was a very difficult request. As C.S. Lewis once said after losing his wife and suffering a crisis in his faith, "I was affraid that I would discover who God really was, and I wouldn't like Him very much." Think about it, that is a very scary thought.

As time went on I had a hard time talking to Christian friends of mine because, I could tell they couldn't even approach understanding what I was going through or what I was thinking. As I continued to struggle with all of this I began to feel isolated and that even those from my church that I felt should be reaching out to me sort off began to give up on me. After all this was way out of anyones comfort zone. Only a few close friends continued to check up on me at this time even though I know it was very difficult for them and I appreciated it more than I can ever tell them. The next several weeks and months are sort of a blurr, I know I felt empty and nothing seemed to get any better.

One morning I woke up before before the sun rose and I fixed a pot of coffee, poured a cup and went out on my back patio to sit and think. It was on this morning that God began to reveal himself to me in the quiet of the morning. As the sun began to rise, it had a special look and feel about it, it's as if I was seeing it for the first time and it was if God was saying to me, "I Am the Creator and nothing exist without Me." I began noticing the grass and the trees and flowers, the birds, the bugs as well as the clouds and the wind and I began to marvel at this miracle we call home. I began to see how everything He created works together perfectly and how none of this could have happened by accident.

Hope began to come back into my life as God began to reveal himself to me for what felt like was the first time.

I'm going to stop here but will pick up from here in my next journal.

Kell Johnson

Thursday, January 24, 2008 3:36 PM CST

Well in my last entry I said I would share with you some of what I have gone through since losing Alex or maybe even more importantly how my outlook has changed in so many areas of my life. Those areas being, but not limited to, what I see as the important things in this life, my thoughts on God and who He is and how He works, how things people say effect me and other areas I am just drawing a blank on right now.

I am going to be writting from my heart being very open and transparent. Some things I say may surprise you, some things you may agree with and some you may disagree with. Some of you may come away from this inspired and some may come away a little confused. I hope that whatever you feel when reading this that my comments will give you reason to pause and think deeply about how you feel.

Those of you that know me well know how much we were trusting God to heal Alex from this horrible disease. You know that I was an active member in my church and if you asked me I would tell you that we were a Christian family.

During Alex's illness I have to say that I felt God's presence with us the whole time until about a week before he died. During that last week it felt like God had left the scene and was nowhere to be found. I felt no hope and felt as if I had been gutted. While walking through the airport in Durham after Alex's death, I felt people looking at me and even saw people looking at me and by the looks on their faces you could see they knew something was wrong. I felt like the walking dead. I was completely empty and void of any life. Everything I had been taught about God being the great comforter and that turning to his word was a must in a time like this was absolutely no help me at at all.

Over the next few days we were surrounded and propped up by friends and family as we planned Alex's funeral. In the days after the funeral family and friends had to get back to their daily routines and we suddenly found ourselves alone. Alone with ourselves, our thoughts, our questions, our doubts, our fears and our overwhelming grief.

Grief that kicks your ass, grief that sickens you, grief that consumes you and after days and weeks of this grief, you decide perhaps you need to go back to church because after all that is where the healing takes place right? RIGHT???

I remember the first church service I went to after we lost Alex, the worship team started off singing "Our God is an Awesome God" and I thought, "you can't be talking about the same God I've been dealing with over the last few weeks because the God I've been dealing with cut and ran out on me when I needed Him most." At that moment, I don't remember another thing about that service.Over the next several weeks I went to church looking for answers but came away more pissed off than anything else.

One day I came home after being away for several hours to find that the toilet had over flowed and the valve had stuck open causing the toilet to just spill out onto the floor for hours. Water had gone out into the hall and soaked all of the carpet and left a terrible mess. I remember looking up to heaven and yelling at God "Can't you stop anything bad from happening?" It was then that I began to give up on God and over the next couple of months I came to the conclusion that God didn't exist and that I had wasted my entire life on Him.

It was over the next few months that I discovered that even though I had given up on God, He apparently had not given up on me.

TO BE CONTINUED

Monday, December 10, 2007 4:34 PM CST

It's been a long time since I last journaled here, mainly because I didn't feel I had anything to add or update to the site.

But I feel that I was wrong. So many of you have been a part of Alex's journey as well as the journey that Mary, Taylor and I have had to continue without him and it's only fair that I continue to allow you to be a part of our journey as so many have asked.

We still miss Alex everyday to the extent that I can not explain, but life has a way of continuing regardless of the loss and pain.

Over the next few weeks I would like to try and let you in on the road we have traveled and the lessons we have learned.

In the meantime, I hope you all have a Merry Christmas and a Happy New Year.

Kell Johnson

Thursday, April 12, 2007 5:05 PM CDT

Three years.

It's very difficult to believe that April 1st marked three years since we lost our precious Alex. I awoke early that morning around 3:00 a.m. and the realization of our loss was the first thing on my mind, as a matter of fact it was the only thing on my mind. The truth of the matter is that I never start a day without the awful knowing that the most horrible of events had become a reality.

The first words out of my mouth came in a whisper that I believe instantly reached Heaven. "Alex, I miss you so very much and I love you more than I can express." I close my eyes and then the next thing I know the sun is just starting to rise.

I was never crazy about getting up before the sun came up or even watching the sun rise, but since Alex's death, watching the sunrise has become a symbol of hope to me. I was wondering how I would get through this day, I felt a deep need to connect with Alex on this day. As sure as the sun rose I was inspired to spend the day photographing things that caught my eye so I started with Alex’s garden in front of our house. Alex’s garden by the way is a little garden of flowers and plants that we plant every spring specifically for Alex.

Anyway I started there and as the day wore on I photographed trees and flowers in other parts of the city. While in the woods taking pictures I suddenly realized that while Alex was in the hospital, he took up photography as a therapy. He really liked it and he was actually pretty good at it. I also realized I was in the wood which was a place that Alex loved to be, so that connection that I was hoping for had been realized. I felt as if my spirit was embracing Alex’s spirit and in some way I knew he heard and understood my whispers from 3:00 a.m.

The picture above if from Alex’s garden.

Kell

Friday, December 1, 2006 1:08 PM CST

I haven't updated this website since June and I don't really know if many people visit it anymore, but I felt like it needed to be updated anyway.

Although I felt the site needed to be updated, I struggled with what to write. I wondered what I could write that would make a difference, what would have any special meaning at this point, to that question I'm not sure I have a good answer. So I've decided to just express my feelings.

I miss Alex as much today as I ever have. I wonder what I could have done different to help him or if there was anything at all that could have been done. All I know is that my heart is still broken over his loss.

When I would come home from work, Alex would hear my car door close and greet me at the door with a big smile a "Hey Dad" and a hug. I ache to experience that again.

About four weeks ago, Mary and I went on a camping trip with three other families in total I believe we had about 10 kids on the trip. It was a wonderful trip, but I was constantly reminded of how he so loved camping with family and friends and it was tough not having him there to share it with us.

We can’t go to or watch a sporting event, especially an LSU football game without thinking of him and missing him. Even so we watch anyway almost as if in some small way we honor him by watching because it was something he loved and something we did as a family.

Although I look to the future and enjoy my life with Mary and Taylor, I feel as if a large part of my life is being lived in the past, because it’s in the past that my memories of Alex are stored. I try to think upon Alex’s Heavenly existence and the day that I will be re-united with him, but I’m not sure I know how that will look and no one else for that matter does either.

Because this world is the only thing I know, I try to imagine this world in a perfect state and that’s what I think Heaven must be. When God first created this world and everything in it, He said that it was good and I find his craftsmanship quite amazing myself.

A couple of weeks ago in church a pastor said that it “wasn’t the things in the Bible that are hard to understand that gives us the most trouble, but it’s the things in the Bible that are easy to understand that give us the most trouble.” like “Love your neighbor as you love yourself” or for me “Be quiet and know that I Am God”. As I have attempted to be quiet I have chosen to do so outdoors in God’s creation where I can experience His handiwork first hand, and if I am still and observe, I believe I hear from God in some way.

I am learning that love, joy and grief come as a package deal. When I think of the love I still carry in my heart for Alex, I am grieved that he is not here for me to express that to him. When I am grieved by the loss of Alex, it is a direct reflection of the love that I have for him and the joy that he and his memory have brought me.

He has brought me so much joy. I have been truly blessed to have had the privilege of being his dad.

Kell

Tuesday, June 27, 2006 11:52 AM CDT

This coming Thursday, June 29th will be Alex's 13th birthday. I don't know if birthdays are a big deal in Heaven, but for now, birthdays are a big deal for us.

For a long time, I would become very sad not only because of the absence of Alex, but because I felt like he was missing out on life and all it had to offer.

It's been slow in coming, but I'm beginning to really understand the truth that Alex is more alive today than any of us that he left behind.

When I think of Alex, I don't think of him in a white steril environment in the clouds, I see him exploring the universe, running through lush valleys and climbing the highest mountains and riding the winds back down to the valley floor. I see him walking with God through the Kingdom that God has created us for and drinking it all in and being filled with joy.

I'm not sad for Alex, I'm sad that I can't be there with him right now. For now, I will enjoy the blessings of being married to Mary and being the father of Taylor and look forward to the time that we are re-united with Alex in God's Eternal Home.

The picture on this page was taken at Minute Maid Park on a trip we made for Alex's ninth birthday. He wanted to go see the Astros play so Mary, Taylor, Alex and I made a long weekend out of it. It was a great trip.

Think of Alex on June 29th and if you want, post something here on his website, we would be glad to hear from you.

Kell

Monday, April 3, 2006 9:37 AM CDT

As many of you know, this past Saturday April 1st made two years since we lost Alex. I can't say that it was any better or any worse than any other day has been. Mary, Taylor and I wake up with the realization that Alex is gone everyday. It never goes away. Friday March 31st was Taylor's 18th birthday and Mary and I celebrated with him with presents and a special dinner. We then celebrated with friends and family yesterday with a party here at our home. It was a good time for all. We are just trying to live life one day at a time. Today is all we have. With this I wanted to share with you something a friend sent to Mary, it really speaks volumes.

Kell

"Get Me Yesterday"

"This is the day the LORD has made. Let us rejoice and be glad in it."

Psalm 118:24 (NLT)

The first episode of "8 Simple Rules" after John Ritter died a couple of years ago was an hour-long special. It began with the Hennessy family learning of the unexpected death of Paul (Ritter), and followed Cate and the kids as they each struggled to deal with the loss in their own ways. To help console the family, Cate's parents put aside their marital differences and came to be with the family in their time of need.

Soon after arriving, Cate's mother and father were arguing over sugar
substitutes and who would get it from the kitchen. Finally Cate's
mother stopped and confessed how trivial they were being. She acknowledged the enormity of Cate's pain, and then volunteered to get the sweetener herself. As she walked away, she addressed Cate, "Honey, can I get you something?"

Cate paused for a moment, and then spoke. "Yeah. Get me yesterday."

How many of us, if granted a request, would join Cate in saying the same thing? "Get me yesterday...

When the one we loved was still here, when the kids were little, when
life was a little less complicated. "Get me yesterday...". When harmful
words could be unspoken, when choices could be altered, when opportunities could be recognized and seized. "Get me yesterday...".

The truth is, while we may long for yesterday or yearn for tomorrow, today is what matters.

Frederick Buechner writes in “Whistling in the Dark”: If you were aware how precious today is, you could hardly live through it. Unless you are aware of how precious it is, you can hardly be said to be living at all... All other days have either disappeared into darkness and
oblivion or have not yet emerged from them.

Today is the only day there is.

God has given each of us the gift of today. May we choose to live it in His love and grace.

Tuesday, February 21, 2006 9:19 AM CST

The following is an email from a friend of ours giving us an update on Nicolas. Rather than trying to relay the information in my own words, I have posted her email. Just to let you know Tim and Suzanne mentioned in the email are parents of Nicolas. If you are confused about this posting, refer to the "read journal history" page on this site to view the last journal. The following email also includes the link to a website started to keep us updated on Nicolas.

Kell

EMAIL:

Hi everyone,

I spoke with Tim last night. He stated that they tried to take Nic off the respirator yesterday, but had to put it back in later because Nic was getting aggitated and wanted to get up and leave. They want to keep him calm and still, so they will leave him on the respirator for a while longer.

They are giving him blood because he has become anemic, he is also on 3 different antibiotics to fight infection. He is scheduled for surgery on Tuesday, they will start skin grafting.

They don't think they will have to graft on his face. This is good. His ears are looking better and they might be able to save them.

Once he has the surgery, a family member will have to be with him 24/7. Suzanne's sisters have been in from out of town, but will be returning home today. Tim and the boys will be returning home this week. So I will probably be asking for those who are able to start preparing cassaroles and food that will be easy for them to just heat up and eat.

There will be a need for help with the boys, as Tim will be going back and forth to the hospital.

A website has been set up for updates and a place for everyone to post prayers and well wishes for Nic and the Whalen family. It is http://www.nicholasupdate.com/

Even with the inclement weather, the blood drive yesterday was a great success. If you didn't get a chance to donate yesterday but want to, there will be 3 others:

Monday, February 20th- Sam's Club off Siegen, 3pm - 8pm

Friday, February 24th- Bernhard Bros., Airline Hwy (between I-12 and Siegen) 6:30am - 12:30 pm

Wednesday, March 1st- Resource One Mortgage 7936 Office Park Blvd. 10am - 2pm

Tim stated that he and Suzanne are very grateful for the outpour of support they have received from family and friends.

While staying at the hospital with Nic, Tim and Suzanne have befriended a young man from Mexico whose brother was burnt badly in a car accident. He is here by himself, has no friends are family for a support system, so even in their time of need, Tim and Suzanne have invited him to their room and are helping this young man so he isn't alone.

Still working on getting details for the bank account information. Will forward that at a later time.

Please continue to pray for Nic and his family. Sherri

Tuesday, February 14, 2006 9:01 AM CST

We found out this morning that a little boy in our community was severely burned yesterday while burning trash in the backyard with his dad. The boys name is Nicolas and he is 10 years old, the same age as Alex. From what I hear Nicolas is burned from head to toe and may not make it.

Please be in prayer for this little boy that God would speak to his spirit and give him comfort and peace and that he would not be affraid and not feel alone.

Please pray for the parents of Nicolas to give them strength and help them deal appropriately with any guilt that they may feel. Pray that they will be able to understand all the information the doctors will be giving them and that they will be able to make good decissions concerning their son.

I will keep you updated as we get more information.

Kell, Mary, Taylor and Angel Alex

Thursday, December 29, 2005 7:30 AM CST

The above photo is one of my favorites. This was during a trip Mary, Taylor, Alex and I took to up state New York for a little skiing and playing in the snow. We stayed with Mary's cousin Peggy and had an opportunity to spend time with her and her family. This was a trip to remember with more snow than we had seen in our lives. It was Taylor, Alex and Mary's first time on skis and I have some great video to prove it.

Mary and I are so grateful that we spent so much time traveling and doing things with the boys, we would always talk about how we were making memories. I can't even tell you how important those memories are to all of us.

Thanks to all of you that continue to visit the website and post from time to time. We want to wish each and everyone of you a very Merry Christmas and a Happy New Year.

Kell

Wednesday, December 28, 2005 12:46 AM CST

Well, this was our second Christmas without Alex and I have to say it hasn't been easy for Mary, Taylor and me.

Sure we've gotten good at putting on a smiley face and wishing everyone a Merry Christmas, but inside you just want to get through the holidays in one piece.

We are thankful for the true Christmas celebration, that being the birth of Christ for it brings us hope that we will one day be re-united with Alex. The tough part is getting through the Christmas season watching others with their families all intact while you're certain that life for us will never ever be the same and that there will always be a vast emptiness that will never be filled. Sure in an effort to bring us comfort some would say, "Well, Alex is celebrating Christmas in Heaven with Jesus this year." Believe it or not, that doesn't bring much comfort, its way more complicated than that.

It’s very easy to celebrate Christmas when life is good. The kids are healthy, they’re in good schools and this year they have a couple of lines in the Christmas musical. Business is good and you just got that nice bonus so you can now book that trip to Europe like you had always dreamed of. Things just seem to go your way; you really are walking through green pastures with the sun over your shoulder. You must be thinking boy “Our God is an Awesome.”

I saw a story of a Christian family that had lost most all of their possessions during Hurricane Katrina and had been forced to move to Baton Rouge temporarily until they could sort things out. Both the husband and wife had lost their jobs, the kids were in new schools with strange surroundings. They were receiving assistance from others for their needs. The husband asked how life could ever be the same. How could they ever explain this to the kids and give them any sense of hope. Why had God allowed this to happen to them? God suddenly didn’t seem too Awesome in his life.

Honestly, if I had heard this man’s story before we lost Alex, I may have asked the same questions he was asking, but after losing Alex, his story sounds so trivial. I would trade places with him in a heartbeat. He may have lost his possessions and his job, but he had his wife and his two children with him and they were safe.

I would like to challenge you to spend some time thinking about how you would respond to God if all of a sudden your life took a turn for the worst. You lose that great job and you can’t seem to replace it. As a result you have to sell your house, take the kids out of private school and move to a much smaller house. College for the kids is now not as easy as you thought. Those green pastures have turned into a field of thickets and weeds and that sunshine over your shoulder is hidden by dark clouds. Now you learn that one of your children has been diagnosed with a horrible disease and may not live, or perhaps actually dies. If you’re like I was two years ago, you would dismiss this challenge and tell yourself, awe this will never happen to us, God will protect us from anything like that. God loves us, we are his special children.

Have you ever felt like God has turned His back on you and left you to fend for yourself. Have you ever questioned His existance and what comes after this life on earth is done.

For me it wasn’t until my worst nightmare came true that I began my desperate search for my true faith and my true God. I have been forced to search for who God really is and not who I want Him to be or who the popular belief says He is. I am no longer afraid to discover the one True God, but truly desire to know Him for who He is.

I urge you to spend some time with God asking Him to reveal His true identity to you. Be quiet and listen, sit still and observe, He will answer you in many different ways.

I would be interested in hearing what God is whispering to you.

Kell

(Searching desperately and learning from whispers)

Wednesday, December 28, 2005 11:05 AM CST

Well, this was our second Christmas without Alex and I have to say it hasn't been easy for Mary, Taylor and me.

Sure we've gotten good at putting on a smiley face and wishing everyone a Merry Christmas, but inside you just want to get through the holidays in one piece.

We are thankful for the true Christmas celebration, that being the birth of Christ for it brings us hope that we will one day be re-united with Alex. The tough part is getting through the Christmas season watching others with their families all intact while you're certain that life for us will never ever be the same and that there will always be a vast emptiness that will never be filled. Sure in an effort to bring us comfort some would say, "Well, Alex is celebrating Christmas in Heaven with Jesus this year." Believe it or not, that doesn't bring much comfort, its way more complicated than that.

It’s very easy to celebrate Christmas when life is good. The kids are healthy, they’re in good schools and this year they have a couple of lines in the Christmas musical. Business is good and you just got that nice bonus so you can now book that trip to Europe like you had always dreamed of. Things just seem to go your way; you really are walking through green pastures with the sun over your shoulder. You must be thinking boy “Our God is an Awesome.”

I saw a story of a Christian family that had lost most all of their possessions during Hurricane Katrina and had been forced to move to Baton Rouge temporarily until they could sort things out. Both the husband and wife had lost their jobs, the kids were in new schools with strange surroundings. They were receiving assistance from others for their needs. The husband asked how life could ever be the same. How could they ever explain this to the kids and give them any sense of hope. Why had God allowed this to happen to them? God suddenly didn’t seem too Awesome in his life.

Honestly, if I had heard this man’s story before we lost Alex, I may have asked the same questions he was asking, but after losing Alex, his story sounds so trivial. I would trade places with him in a heartbeat. He may have lost his possessions and his job, but he had his wife and his two children with him and they were safe.

I would like to challenge you to spend some time thinking about how you would respond to God if all of a sudden your life took a turn for the worst. You lose that great job and you can’t seem to replace it. As a result you have to sell your house, take the kids out of private school and move to a much smaller house. College for the kids is now not as easy as you thought. Those green pastures have turned into a field of thickets and weeds and that sunshine over your shoulder is hidden by dark clouds. Now you learn that one of your children has been diagnosed with a horrible disease and may not live, or perhaps actually dies. If you’re like I was two years ago, you would dismiss this challenge and tell yourself, awe this will never happen to us, God will protect us from anything like that. God loves us, we are his special children.

Have you ever felt like God has turned His back on you and left you to fend for yourself. Have you ever questioned His existance and what comes after this life on earth is done.

For me it wasn’t until my worst nightmare came true that I began my desperate search for my true faith and my true God. I have been forced to search for who God really is and not who I want Him to be or who the popular belief says He is. I am no longer afraid to discover the one True God, but truly desire to know Him for who He is.

Searching desperately and learning from whispers.

Kell

Thursday, December 15, 2005 1:15 PM CST

Monday, October 24, 2005 4:56 PM CDT

Alex would not be happy with his Astro's right now, he would want them to be ahead in the series. The photo above was taken at Minute Maid Park when we took Alex to see the Astros play for his 9th birthday. We all had a wonderful time on that trip.

Two years ago this past October 17th was when Alex was diagnosed with leukemia and all of our lives would change forever. I can't tell you how much I miss him. Living without him has been tough for all of us, but we continue to take one day at a time.

Please continue to pray for us as we continue to struggle with the loss of Alex.

Kell Johnson

Friday, September 16, 2005 2:51 PM CDT

Due to the devastating impact that Hurricane Katrina imposed, The Leukemia & Lymphoma Society's Light the Night walk has been postponed. Plans are underway to re-schedule the Baton Rouge walk that was set for Sunday, September 25th and will be announced in the near future. You can still make your contributions at the link below to help find a cure for this terrible disease. We will let you know when the event has been rescheduled.

Kell, Mary and Taylor

Sunday, September 11, 2005 8:48 PM CDT

Hi Everyone,

With all the aftermath of Katrina, we are behind on our fundraising for Light the Night. For those of you who are not familiar with Light the Night, it is the Leukemia and Lymphoma's yearly fundraiser. The picture above is from last year's walk when we raised $3,000. Our goal for this year is $5,000. The easiest way to sign up is to click on the link below. It will bring you directly to our Light the Night web page and you can register as a member of our team "Alex's Army". The walk is on Sunday, September 25th. Pre-Walk festivities,(i.e. food, band etc.) begin at 5:30 and the walk begins at 7:00. Last year we met at Subway on the corner of North Blvd. and Third street. We'll meet there again this year. We would love to have you come join us, but even if you can't be there please donate to this cause. We must find a cure for this terrrible disease.
Mary

Wednesday, September 7, 2005 7:34 AM CDT

Sorry we haven't posted in a while, but Katrina has had her way with south Louisiana. We are all fine and thankfully have no loss to report, but life here has changed. We will post again as soon as we can.

Kell

Monday, August 8, 2005 7:32 PM CDT

Hi Everyone,
I'm not sure how many of you still log on, but I have a special request. One of our "cell mates" at Duke is in trouble. Sweet "Queen Maddy" www.caringbridge.org/ca/queenmaddy, is in urgent need of prayer. She is in PICU on a vent and experiencing liver and kidney problems. The Bates family is very close to our hearts. Please pray for complete healing for Maddy and strength and comfort for Mom and Dad (Richelle and Joe). Big brother Ethan needs prayer too as I'm sure he is feeling confused and scared.
I also wanted to let you know that we will be participating in the "Light the Night" fund raiser put on by the Leukemia and Lymphoma Society every year. Last year we raised $3,000 to help fight this terrible disease. The picture above is from last year's walk. If you would like to paricipate click on the link below. You can have people sponsor you to walk, or just donate. We are also looking for corporate sponsors.
Thanks,
Mary

Saturday, August 6, 2005 7:23 PM CDT

Wednesday, June 29, 2005 8:14 AM CDT

HAPPY BIRTHDAY ALEX!!!!!!! We love you and miss you so much.

12 years ago today Alex was born in Baton Rouge, Louisiana and became the second son that God blessed us with. Taylor was thrilled to have a new baby brother, but was a little upset that Mary and I wouldn't name him "Michael Jordan Johnson". There was an instant bond with Taylor and Alex, I remember that while the nurses were cleaning Alex up after birth, Alex was screaming and crying until Taylor went over and started holding his little brothers hand and talking to him. At that very moment Alex began to calm down and stop crying.

With the addition of Alex our family was complete. Over the years the four of us traveled to little league games, Cub Scout meeting and school and church events. Both Taylor and Alex would become involved in our churches children's ministry participating in Sunday School, Vacation Bible school and various musicals.

When Alex was only 18 months old we introduced him to camping for the first time. He loved it from that day forward. Over the years we traveled and camped in the mountains, the beaches at Disney World and all points in between. We camped with the Cub Scouts and with other families, we camped in tents and in our pop-up. God blesed us in that all four of us loved to be with each other traveling and camping.

From the time Alex was born until about three years ago we lived in the house I grew up in surrounded by many of the neighbors I grew up with. We had a neighborhood swimming pool that was the center of activity for all the kids during the summer. It was a care free life for Taylor and Alex as they were surrounded with friends and fun filled days.

Mary and I are so thankful that we were able to expose Taylor and Alex to so many things and take them to see so many places. Everytime we would travel, the boys would ask, "How many states have we been to now?" and I think at last count it was 14 or 15. They attended plays and visited museums, climbed mountains and went whitewater rafting, they flew on planes on rode on trains, swam in the oceans and both snow skied and water skied. They fished and ran trot lines, went to Disney World and canoed with the manatees. Alex and I even attended the Sugar Bowl to watch LSU win the National Championship. All those times and places and so many memories. Yes we are truly thankful for the time we have spent with our boys.

On this day Mary, Taylor and I will be reflecting back on all of those memories with great fondness. We thank God for allowing us to be a part of Alex's life. We thank God that he chose us to be Alex's parents and brother.

Thank you Alex for blessing us and making our lives so wonderful. Happy Birthday buddy we love you and can't wait to see you again.

Love Mom, Dad, and Taylor

Sunday, May 15, 2005 5:18 PM CDT

This is one of my favorite pictures of Alex taken about a month before he was diagnosed. He looks so happy and carefree with not a care in the world. Alex's love for life continues to be a source of strength and inspiration to Kell,Taylor and I and anyone who knew and loved him. Alex never did anything halfway, except maybe for school work! He was a fierce competitor and took on his battle with leukemia with the same determination of a baseball or football game. Besides missing him so much, that's what hurts so much and if I'm honest makes me mad. It just doesn't seem fair for him to have lost his battle to a stupid adeno virus when he came so far. He wanted so much to live. As I was journaling this morning and writing to Alex, I was reminded that Alex still lives and if we allow ourselves, we can still experience him in our lives daily. What I can't do anymore is mother him and that hurts. I love being a mother to both Taylor and Alex and my job with Alex wasn't finished. What became clear to me at that moment is that I have a choice to walk in faith that Alex is with God safe and happy with all memories of his struggle erased. The fact that I miss him terribly and mourn for the lost opportunity to mother him does not change the truth that Alex is in the presence of our God whole, happy and perfect. What makes this faith thing so difficult is that we don't see the whole picture and mommies want to be in control of their children. They want to know where they are and what they're doing. I ask Kell all the time, "What do you think Alex is doing right now?" He makes up some great story about flying around the stars or organizing a baseball or football games among the saints and we smile. A wise person encouraged me to continue to imagine wonderful things that Alex is doing because what ever we can imagine will not come close to what heaven is really like.
Thank you for your continued love and support for our family. Please be in prayer for Maddy, Lane and Ashley and their families. These children were on the bone marrow unit with Alex and are currently experiencing complications. This is such a long and exhausting process with a constant fear of the unknown. All of these children and their families are remarkable and are very close to our hearts. For those of you who donated money or items to the Child Life Department at Ochsner Hospital in honor of Alex, we will be going to the hospital in the next couple of weeks to present the gifts. I will keep you informed. The last month has been very hectic with school, weddings and proms so we have not had a chance to make a trip to New Orleans. We will be posting new pictures soon of the most handsome couple at the Dutchtown High junior/senior prom. Taylor continues to do well and gives us great joy.
Love,
Mary

Sunday, May 15, 2005 8:46 AM CDT

This is one of my favorite pictures of Alex taken about a month before he was diagnosed. He looks so happy and carefree with not a care in the world. Alex's love for life continues to be a source of strength and inspiration to Kell,Taylor and I and anyone who knew and loved him. Alex never did anything halfway, except maybe for school work! He was a fierce competitor and took on his battle with leukemia with the same determination of a baseball or football game. Besides missing him so much, that's what hurts so much and if I'm honest makes me mad. It just doesn't seem fair for him to have lost his battle to a stupid adeno virus when he came so far. He wanted so much to live. As I was journaling this morning and writing to Alex, I was reminded that Alex still lives and if we allow ourselves, we can still experience him in our lives daily. What I can't do anymore is mother him and that hurts. I love being a mother to both Taylor and Alex and my job with Alex wasn't finished. What became clear to me at that moment is that I have a choice to walk in faith that Alex is with God safe and happy with all memories of his struggle erased. The fact that I miss him terribly and mourn for the lost opportunity to mother him does not change the truth that Alex is in the presence of our God whole, happy and perfect. What makes this faith thing so difficult is that we don't see the whole picture and mommies want to be in control of there children. They want to know where they are and what they're doing. I ask Kell all the time, "What do you think Alex is doing right now?" He makes up some great story about flying around the stars or organizing a baseball or football games among the saints and we smile. I wise person encouraged me to continue to imagine wonderful things that Alex is doing because what ever we can imagine will not come close to what heaven is really like.
Thank you for your continued love and support for our family. Please be in prayer for Maddy, Lane and Ashley and their families. These children were on the bone marrow unit with Alex and are currently experiencing complications. This is such a long and exhausting process with a constant fear of the unknown. All of these children and their families are remarkable and are very close to our hearts. For those of you who donated money or items to the Child Life Department at Ochsner Hospital in honor of Alex, we will be going to the hospital in the next couple of weeks to present the gifts. I will keep you informed. The last month has been very hectic with school, weddings and proms so we have not had a chance to make a trip to New Orleans. We will be posting new pictures soon of the most handsome couple at the Dutchtown High junior/senior prom. Taylor continues to do well and gives us great joy.
Love,
Mary

Tuesday, April 12, 2005 9:28 AM CDT

As I sat down to write this journal, I was about to start it out with, "Alex loved this time of year" and I was going to go on about how he loved practicing and playing baseball and looking forward to the summer and all the activities he would be involved in. But then I realized that Alex loved everyday of his life and it didn't matter what time of year it was or what he was involved in, he just loved being Alex Johnson and he was very comfortable with himself and happy with his life. I'll never forget one day when he and I were shooting hoops out in the driveway and I noticed how much fun he was having. I had to ask him, "Alex what is your favorite sport?" and without hesitation while he was taking a shot, he said,"Whichever sport I happen to be playing." To me that spoke volumes of who he was and how blessed he was to have that outlook. To be happiest with whatever you happen to be doing at that moment is something I pray God would bless me with. Mary and I were looking back on the six months Alex was in the hospital going through treatment and we can truly say that some of the sweetest times we've had as a family were spent during that time. I think it was because Alex's approach to life had rubbed off on us by then and that was to enjoy to the fullest that moment in time regardless of what was going on in our lives or what we were doing.

Alex as your dad I want to thank you for being such a blessing to us and for being such an inspiration and teacher of life to us. We love you and miss you more than you can imagine. We look forward to the day that we are re-united with you.

Kell (Dad)

Friday, April 8, 2005 3:29 PM CDT

Mary, Taylor and I would like to thank everyone that joined us at the cemetery to remember Alex on April 1st. I would say that at least 50 of our friends and family showed up to be with us. It really means a lot to us.

The reason that I have an image of space and the earth on the home page of this site is because after the visit to the cemetery, most of us made a trip to the local observatory to view a star we had named in honor of Alex. The name of the star is "Alex Johnson" It is impossible to see the star with the naked eye and pretty tough to find without expert advice, but we did view the star which made the night even that much more special.

Alex's favorite constillation was Orion, he even became very good at locating it in the night sky. The star Alex Johnson is in a star cluster just above Orion, so if you don't have a telescope but you can find Orion you will be looking in the area where Alex's star is located.

Thanks once again to those that showed up and to the many that weren't able to make it, but were thinking of Alex.

We'll talk soon.

Kell Johnson

Thursday, March 24, 2005 1:58 PM CST

It's almost been a year since we began our journey here on earth without Alex at our side. Although we know that he is in paradise with Our Heavenly Father and we still feel his presence, the walk here without him has been long and difficult. We will never stop missing him until we are re-united with him in Heaven.

At 6:00 on Friday April 1st, 2005 you are invited to attend a short service at Resthaven Cemetery to remember the life of our precious Alex. We will be remembering his love for life, his courage through his challenges and the strength that he amazed us with during his entire life. We will also be collecting donations to purchase Play Station II equipment and games for the Childlife Program at Ochsner Clinical Foundation in New Orleans. They were so good to Alex there and we just want to help as we can.If you want to donate,checks can be made out to "The Cookbook Fund" if you can't make the service, donations can be dropped off at The Chapel on the Campus.

In memory of Alex, we have contacted the International Star Registry and have made arrangements to have a star officially named after Alex. The star will be named "Alex Johnson". I have also contacted the Highland Road Observatory here in Baton Rouge and at 7:00p.m. following the service for Alex, they are going to locate the star "Alex Johnson" with the big telescope and allow us to have a private viewing. We would like to invite all of you to join us there as well. We will be making the short drive to the observatory immediately following the service at the cemetery, so if you don't know where it is, just follow us.

Thanks so much for the continued love and support you have shown us, you all mean so much to us. We hope to see you on April 1st.

Kell, Mary and Taylor

Thursday, March 24, 2005 12:59 AM CST

It's almost been a year since we began our journey here on earth without Alex at our side. Although we know that he is in paradise with Our Heavenly Father and we still feel his presence, the walk here without him has been long and difficult. We will never stop missing him until we are re-united with him in Heaven.

At 6:00 on Friday April 1st, 2005 you are invited to attend a short service at Resthaven Cemetery to remember the life of our precious Alex. We will be remembering his love for life, his courage through his challenges and the strength that he amazed us with during his entire life. We will also be collecting donations to purchase Play Station II equipment and games for the Childlife Program at Ochsner Clinical Foundation in New Orleans. They were so good to Alex there and we just want to help as we can.If you want to donate, but can't make the service, please post a message here on the website and we will let you know how to donate.

In memory of Alex, we have contacted the International Star Registry and have made arrangements to have a star officially named after Alex. The star will be named "Alex Johnson". I have also contacted the Highland Road Observatory here in Baton Rouge and at 7:00p.m. following the service for Alex, they are going to locate the star "Alex Johnson" with the big telescope and allow us to have a private viewing. We would like to invite all of you to join us there as well. We will be making the short drive to the observatory immediately following the service at the cemetery, so if you don't know where it is, just follow us.

Thanks so much for the continued love and support you have shown us, you all mean so much to us. We hope to see you on April 1st.

Kell, Mary and Taylor

Thursday, March 10, 2005 10:48 AM CST

Well the warmer months are approaching and this is the time of year that we begin to plan our summer vacations and weekend getaways. Taylor has requested that we pull our camper to the Rockies this summer so we are presently gathering information to make that long drive out west.The gathering of information, reading about points of interest and charting out the trip is always an exciting process in itself. The anticipation seems to grow the more you learn about your destination and who and what you'll see when you get there.

The anticipation of seeing Alex again when we get to Heaven is growing more and more each day as we investigate and learn more about our eternal home. We miss Alex more than you can imagine, but the anticipation and knowledge that we will not only see him again, but spend eternity with him in our Father's presence allows us to get up every morning and live life one day at a time.

I promise I will try to post more often in the future and I'll be adding more pictures of Alex soon.

Kell

Wednesday, March 9, 2005 4:28 PM CST

Well the warmer months are approaching and this is the time of year that we begin to plan our summer vacations and weekend getaways. Taylor has requested that we pull our camper to the Rockies this summer so we are presently gathering information to make that long drive out west.The gathering of information, reading about points of interest and charting out the trip is always an exciting process in itself. The anticipation seems to grow the more you learn about your destination and who and what you'll see when you get there.

The anticipation of seeing Alex again when we get to Heaven is growing more and more each day the more we investigate and learn more about our eternal home. We miss Alex more than you can imagine, but the anticipation and knowledge that we will not only see him again, but spend eternity with him in our Father's presence allows us to get up every morning and live life one day at a time.

I promise I will try to post more often in the future and I'll be adding more pictures of Alex soon.

Kell

Monday, February 7, 2005 7:20 AM CST

It's been a while since I last wrote. Mary, Taylor and I are getting along as well as can be expected taking things one day at a time. Yesterday was Super Bowl Sunday, a day Alex always looked forward to because of his pure love for the game of football. Yesterdays Super Bowl was also a game we welcomed with opened arms as we cherished the memories of how Alex so enjoyed Super Bowl Sunday. It came as no surprise when the Patriots won because that is who Alex would be pulling for.

Yesterday morning in church as the worship team was singing, I once again found it difficult to lift my voice in song praising God so I stood quietly as others around me sang. This has been an ongoing struggle for me every since we lost Alex. Before Alex got sick, I was a big part of our churches worship team leading the congregation in worship on Sunday mornings and during special events. Not a Sunday goes by that someone doesn't comment to me on how they miss hearing me sing on Sunday mornings. Because of this it feels strange to stand there on Sunday mornings silent as others sing.

During Communion yesterday, I sat in my seat with me eyes closed and head bowed as I asked God to reveal to me why I can't seem to sing. At that moment I began to focus on Jesus and his gift of Salvation. Once my focus turned from the loss of Alex to the eternal gift God has given us through the death and resurection of His Son Jesus Christ, then I began to find my song of praise and worship.

I know I will see Alex again and I must focus on the fact that God has made this possible. What a gift and what a day to look forward to.

Kell

Saturday, December 25, 2004 11:44 AM CST

Merry Christmas Everyone,

This morning we woke up to a white Christmas in Prairieville Louisiana! We decided it was Alex's present to us. When Kell asked me what I wanted for Christmas, I told him a sign from God that Alex was safe and happy. Well, we are choosing to believe God answered that request. Kell said he could just hear Alex saying "Hey, Mom and Dad look what God let me do." It has been a surprisingly peaceful and joyful Christmas. As I have mentioned before we are choosing to focus on our blessings and not our losses. Although it helps us to look forward to the day we will see Alex again, it does not lessen the pain of missing him so much that you feel your heart is truly breaking. We would like again to thank all of you who have helped us survive this past year. My friend Vi Atchison gave me a daily devotional entitled Streams in the Desert. Vi lost her precious daughter, Renee this year and has been a model of faith and trust. The devotional for December 19, sums up what you all have done for us. Please accept this poem as a Christmas present from our hearts to yours.

If you have gone a little way ahead of me, call back
It will cheer my heart and help my feet along the stormy track;
And if,perhaps,Faith's light is dim,because the oil is low,
Your call will guide my lagging course as wearily I go.

Call back,and tell me that He went with you into the storm;
Call back and say He kept you when the forest's roots were torn;
That, when the heavens thunder and the earthquake shook the hill,
He bore you up and held you where the lofty air was still.

O friend, call back, and tell me for I cannot see your face;
They say it glows with triumph, and your feet sprint in the race;
But there are mists between us and my spirit eyes are dim,
And I cannot see the glory, though I long for word of Him.

But if you'll say He heard you when your prayer was but a cry,
And if you'll say He saw you through the night's sin-darkened sky.
If you have gone a little way ahead, O friend, call back
It will cheer my heart and help my feet along the stony track.

Thank you for "Calling Back" to us. Please continue to do so.
Love,
Kell, Mary, Taylor and Alex, alive and well with Our Risen Savior.

Tuesday, December 14, 2004 1:18 PM CST

The memorial service Sunday night was beautiful. Thank you Susan, Floyd, Kevin, Alex and Susan for attending. We were very touched to see you there. Thanks to all the rest of you who lit candles in memory of Alex. We are making it day by day with God's help and the help of our friends and family. Taylor is a great comfort and joy to both Kell and me. We are trying to stay focused on the gift that Alex was and the many happy memories of our time together.
We were very sad to learn that a toddler named Maddy who was on the bone marrow unit with us at Duke has relapsed. Maddy had a transplant to cure her from AML. She was doing beautifully back home in California. A recent check up revealed that the leukemia is back. Please pray for Maddy, her mom and dad and big brother. They are a beautiful family and were such a comfort to us. Maddy's site is
caringbridge.org/ca/queenmaddy.
Love,
Mary

Tuesday, December 7, 2004 7:50 AM CST

Good Morning Everyone,

As Kell has mentioned, we continue to be thankful for all our wonderful memories of our short time with our precious Alex. He was such a special gift from God. Although we don't understand why he was taken from us, I believe the only pathway to healing can be the one of gratitude. Sunday, Dec. 12th is National Children's Memorial Day. People around the country will be lighting a candle from 7:00 to 8:00 in memory of all the children who have gone to be with Our Lord. Commpassionate Friends will be meeting at St. Paul's Lutheran Church (2021 Tara Blvd.) at 6:30 to remember our precious children. The service will start at 7:00. Anyone is welcome. You may light a candle whereever you are in memory of Alex. We will be remembering his love for life and his beautiful smile. Thankyou for loving our Alex and for loving us. We love you.
Mary

Thursday, December 2, 2004 10:48 AM CST

Well the holidays are upon us already and Mary, Taylor and I are doing our best to keep the holiday spirit. As you can well imagine there is a tremendous void in our lives now and the holidays seem to shine a light on just how much we miss having Alex with us.

Because Alex as well as the rest of us loved this time of year so much, we have plenty of video and photographs to jog our memory of those blessed times we shared as a family of four. The Thanksgiving dinners and the cooler weather. The nights in front of the fireplace with a cup of hot chocolate. The camping trips that we were able to squeeze in during the holidays. Cutting down and decorating our Christmas Tree. Our Christmas ski trip to upstate New York and so many other wonderful memories.

As tough as it is, I feel it's important that we continue to make new memories and as we do, we will always remember Alex and feel his presence with us. To move forward doesn't mean to forget, but rather to move closer day by day to the time when we are reunited with Alex.

Kell

Monday, November 8, 2004 9:33 AM CST

Sunday, October 17th 2004 marked the one year anniversary of the day that would change our lives forever. I almost hesitate to use the word "anniverary" because up until now I have associated the word with happy occasions such as weddings and special event. It has been hard to think of anything happy associated with October 17th because of the news we would receive that day. Not only was it the day Alex would be diagnosed with a rare form of leukemia, but it also was the day that Alex left our family home in Prairieville only to return for three short visits over the following six month period.

I remember house hunting in the Prairieville area before settling on the home we’re in now and I remember the one thing I really wanted in a new home was a yard big enough for the boys to run around and play in. During this search for a new home Mary would find a house she liked and as we would go visit it, she would be all excited to go inside to check out the floor plan and before I would set foot in the house, I was stepping off the distance between the pitchers mound and home plate or laying out a mini-football field in my mind. If there wasn’t enough room for either of those two things, I just didn’t see it as an option for us. When your boys are outside boys a small yard just won’t do. We eventually found a home that had a floor plan that Mary liked that also sat on almost an acre of land giving us plenty of room for outdoor fun. We played football and baseball, threw the Frisbee, star gazed at night, jumped on the trampoline, had water balloon fights, raised a garden (once), built bonfires, slid on the slippery slide, played with Flash and yes cut lots and lots of grass. We still cut lots of grass, but now with Taylor older and without Alex to organize a game, the yard has become very quiet. Whenever I go into my backyard I am constantly reminded of the way things used to be and find myself yearning to have those days back but deeply saddened to realize that those days can only be relived in my mind.

I knew the weekend of October 17th 2004 would be tough for us, so I planned a family camping trip for Mary, Taylor and myself to Chicot State Park about two hours away. As most of you know we started camping when the boys were in diapers and it has proven to be an activity that we all loved to do as a family. Most of our family vacations have been spent in either tents or our pop up camper from the Gulf Coast and Walt Disney World to the mountains and all points in between. Camping was a gift to our family, because we all shared an interest and enthusiasm for being with each other exploring the outdoors and seeing and experiencing other places and points of interest with each other. It was at these times that I felt closest to my family. That is exactly why I felt it important for the three of us to be in a place, doing the things that Alex and the rest of us loved doing together.
I could feel his presence there with us as we camped in his favorite spot but desperately wanted to hug and kiss him and tuck him into his sleeping bag at night. I did bring one of his hats and his sleeping bag with us because I can’t stand the thought of doing anything or going anywhere without including him in on it even if it is just symbolic. It seems to be my little way of telling him that I love him, I miss him, that I desire to have him by my side and that he will always be a part of my life.

Our last family camping trip with Alex was just days before he was diagnosed with leukemia. Only a few days before the doctors at Duke discovered in Alex the virus that would eventually take his life, he and I were in his hospital room planning our next camping trip to his specifications. Something tells me that camping needs to always be a part of our lives.

Still seeking God and asking the very hard questions and still loving and missing Alex more than anyone can imagine.

Kell

Monday, October 11, 2004 5:47 PM CDT

Please pray for Mary, Taylor and me this week. This coming Sunday October 17th 2004 marks one year since Alex was diagnosed with leukemia. I remember every minute of that day as it has been etched in my mind forever as one of the worst days of our lives. The three of us have decided to go camping this weekend to remember Alex. In case you don't know, camping was an activity that Mary, Taylor, Alex and I loved. Alex took his first camping trip with us when he was only 18 months old and he was hooked from that point on. I even said shortly after Alex's death that I felt that he was in heaven picking out the best camping spots for when we go to join him.

Check the photo album, I have added a few pictures.

Thanks again for all of your contnued support.

Kell

Wednesday, September 22, 2004 1:56 PM CDT

Hi Everyone,

Kell, Taylor and I continue to miss our Alex everyday and remain determined to keep his memory alive in the hearts of those who loved him. One of the many ways we are doing this is participating in the Light the Night Walk this Sunday night, Sept. 26th at 7:00 down North Blvd. in down town B.R. The walk is the Leukemia and Lymphoma Society's annual fund raiser to help find a cure for these terrible diseases. Many of you have already signed up to walk with our team-Alex's Army. Those of you who would like to walk can let us know through the web-site, give us a call or simple show up Sunday night at 5:30 to register. The walk is at 7:00. A $25 donation will get you an illuminated balloon and a $100 donation will get you a T-shirt.
Looking forward to seeing many of you there. We will be gathering at the Subways on the corner of North Blvd. and 3rd St. Kell's company has made a banner with the caption
Alex's Army. We shouldn't be too hard to miss. I hear there will be a band and food. Thanks for everything.

Love,
Mary

Sunday, September 12, 2004 11:58 AM CDT

Saturday September 4th was a very special day for Mary Taylor and me as well as all of those that loved Alex so much. The number 52, the number Alex wore as a member of the Championship Prairieville Bronco Football Team was retired in honor of Alex.

I would first like to thank Coach Kenny Sunde and his wife Michelle Sunde for spearheading this and making sure that this became a reality. I would like to thank Patricia Dees for her continued support and to thank her for using her talents in writting yet another beautiful poem about Alex.

I would like to thank the entire coaching staff from last year and this year as well as all the players and parents that have continued to be a support to us. I would like to thank the entire league including all of the teams coaches players and parents for treating us as part of their family, we will never forget your acts of kindness.

At half time of the Bronco's game Saturday Everyone was asked to the middle of the field for the presentation. A friend of ours, Brian Kinchen, who played in last years Super Bowl for the New England Patriots was kind enough to be with us and addressed the crowd. Brian I want to thank you for your words of hope and inspiration. Just to let you know, when Alex was in the hospital at Duke, Brian was playing in the Super Bowl and Alex was cheering him on even though we were the only ones there pulling for the Patriots. As many of you may know Alex was a big LSU Football Fan, he and I were able to attend the Sugar Bowl in New Orleans to cheer the LSU Tigers on to a National Championship. During the season one of Alex's favorite players for LSU was starting defensive safety Jack Hunt. Both Jack and Alex were the starting safeties on their teams and Alex really followed his career with the Tigers. I want to thank Jack Hunt for being there with us as well.

After the ceremony both Brian and Jack took pictures with kids and adults as well and signed lots of autographs. They also brought along their Championship rings to show to everyone. Once again thank you Brian and Jack, I can't tell you how much your being there with us meant to us.

I also want to thank a very special person for being there with us and that is Nurse Andy Denny. Andy is as big of a sports nut as Alex was and Alex really loved having Andy as one of his nurses. Thanks Andy, we love you and appreciate you being there with us.

Over the next few days I hope to post some of the photos of the ceremony to this site, but I do have one photo I can share and that is of Brian Kinchen, Andy Denny and Jack Hunt standing together in that order from left to right.

Thanks to everyone for your continued support.

Kell Johnson

Tuesday, August 31, 2004 5:42 AM CDT

This coming Saturday, September 4th, Alex's football team, the Prairieville Broncos will be retiring Alex's number and jersey. What an honor for Alex. For those of you that would like to attend, the game will be played at 8:30 a.m. on Saturday morning and the ceremony will take place at half time. If you are going to the LSU game, you will have plenty of time to make both. Mary, Taylor and I still miss Alex in a way that is impossible to discribe but it does our hearts good when people continue to show us through their thoughts and gestures that they too miss Alex.

For those of you coming to the game, it will be played at Prairieville Middle School. To get there from Airline Hwy turn onto hwy 42 in Prairieville, drive about two miles and turn right on 930 across the street from Broussard Grove Baptisit Church. The school is on 930 about a mile and a half from hwy 42. Park where you can and come join us at the football field.

Kell

Monday, August 9, 2004 12:31 AM CDT

During the 2002 Christmas holidays, Mary and I decided to take the boys snow skiing. We looked at our options and decided to take them to upstate New York where we could stay with and visit family. It was a wonderful trip that all four of us enjoyed and talked about often. There were record amounts of snow and Taylor and Alex were able to play in a winter wonderland during this very special time of year. I took lots of video footage of Mary and the boys skiing and needless to say this continues to be some of our most treasured footage ever. Alex asked to view the tape quite often over the last couple of years.

I also took still photos of this trip of which one very important roll was lost before we could get it developed. We turned the house upside down searching for this missing roll of film, but were never able to find it. Over time we just stopped looking and finally came to the conclusion that it was lost forever.

Last week as I was driving home from work, Mary called and asked me if I wanted to hear something wierd and I hesitated before saying yes. Well she tells me that a friend of ours from church had taken some film in to be developed thinking it was church related pictures since she is the youth director at church. Well the first group of pictures she opened was of her wedding and the second group she opened was our ski trip. I couldn't believe it, I kept praying that these pictures would somehow, someday show up and they did. Her husband after hearing the story quickly put together what had happened. They had loaned us their ski bibs and jackets and I must have left a roll of film in his ski jacket. I can't imagine why I never thought to look in that jacket, but I never did.

Anyway, I decided to share with you some of the pictures from that roll of film. Check them out.

Still serving an awesome God, still asking him the tough questions and still loving and missing Alex more than anyone can imagine.

Kell

Monday, August 2, 2004 11:34 AM CDT

On July 21st Mary, Taylor and I packed up our bags and drove to Florida for a long weekend at the beach with our dear friends the Kearneys. We were not sure how this trip would effect us since it was the first time we have gone on a family vacation since Alex died. I was also the first time we had been on vacation without Alex in 11 years.

Even though most of our vacations have been spent in our camper, we decided this time to rent a condo since there were going to be nine of us going. Taylor has been friends for a long time with the two older Kearney boys, Jonathan and Drew and Alex was very good friends with their youngest son whose name also happens to be Alex. We referred to them as Alex J. and Alex K. when they were together. We also invited another friend of Alex J's and Alex K's, Joseph Garrett. Alex J., Alex K. and Joseph were all friends and enjoyed doing many of the same things together. And oh yeah, we also invited Kevin and Liz Kearney so that Mary and I would have someone our age to play with.

Anyway as with most things in life these days, everything has that bittersweet taste about it. We were excited to be going to Florida, but we wanted Alex to be there with us. We thought of him almost constantly as the area we went to was one of our favorite places to visit as a family. I was constantly reminded of how much Alex enjoyed the beach and everything about it, he and I both enjoyed snorkeling for shells together and he and Taylor loved to ride the waves together. Mary was the archietect of the sandcastles and they enjoyed building and digging together. We loved being a family and spending time with each other, although we'll always have those memories, things will just never be complete again without him. Our hope though is in the fact that we will one day be reunited with him in the presence of God to live the promised eternal life together. That excites me more now than ever before.

Florida was fun, we all had a good time and I know having the Kearneys there with us was a blessing, it would have been tougher, or almost impossible to face that trip without them.

As of yesterday it's been four months since Alex went to be with our Heavenly Father and we miss him more now than ever before, but I have to tell you that I Praise God that he allowed me to be Alex's dad for the time Alex was here with us. My life was and continues to be blessed by that precious little boy. Both of my boys are my heart and I love them dearly.

Mary, Taylor, Alex and I were so blessed in so many ways, and continue to be blessed. The four of us had each other and we enjoyed doing things together. Our blessing was that we all loved traveling and camping together. God blessed us with a common love for the outdoors and camping and I can't even describe how close that united us as a family. If anything ever gave me the warm fuzzies, it was time spent with my family on our many camping trips. With that being so, we have chosen to remember and honor Alex by continuing that family tradition rather than putting it on the shelf. Alex will always be with us and travel with us in spirit.

I have a feeling Alex has already picked out a few prime spots in Heaven for us to set up camp, gather around a campfire and enjoy spending time with each other as a family.

Our prayers and thoughts continue to be with the children and the families of those that we came to know and love at both Ochsners and Duke over the past several months as well as all the doctors, nurses and staff of those two facilities. We love you, miss you and pray for your continued strength, physically, mentally and spiritually.

Still serving an awesome God, still asking the tough questions, and looking forward more than ever before to being reunited with Alex in the presence of The Father.

Kell Johnson

Friday, July 16, 2004 11:18 AM CDT

Today seems to be a pretty good day here in the Johnson household. Although Alex is constantly in our thoughts, those thoughts have somehow begun to turn more and more toward all the wonderful times we had with Alex, and I believe thoughts of things to come when we will one day be with Alex again in the presence of our Savior Jesus. The one word that comes to mind when I reflect on things past and things to come is "HOPE". From the day Alex was diagnosed, we had hope, during his treatment we continued to have hope and up until his very last breath we had hope of a healing. I must admit, I was very confused and disappointed in God that he didn't honor my prayer by healing Alex and I was very mad at him for allowing this to happen. But as a little time has passed, I have recieved a measure of peace and a dose of hope from God and I say from God only because I can't begin to imagine where else it would come from. A friend of ours sent us a letter the other day describing a dream she had the night before Alex died. The dream revealed Jesus pacing back and forth at a very rustic door much like an expectant father would while awaiting the birth of a child. Also present was none other than Satan himself, but he was coward down in a corner as Jesus turned to him and commanded, "When he gets here you will not touch him, he is mine and you have no claims to him." When Alex arrived, he was whole and Jesus wrapped his arms around him and said "welcome home my precious one, I have been waiting for you." I believe that her dream was accurate in that Jesus is waiting for us so he can wrap his arms around us all and say to us "welcome home my precious one, I have been waiting for you." As for God not honoring my prayer, well I am starting to believe that he perhaps honored the prayer I most wanted him to answer and that was that my children would grow to know Him, serve him and live with Him in eternity. Please feel free to continue to post on this site, we love to hear from you. Also check out the photo album, I am adding new photos.

Kell

Wednesday, July 7, 2004 6:58 AM CDT

The photo above is of a little statue that Mary's sister-in-law Annette found and gave to us on the 4th of July. She spoke with someone to find out the colors of Alex's football team and painted the little football player with the ball to match Alex's uniform. This piece is now on our mantle and will always be treasured.

I have also posted a few new pictures of Alex on this site.

Still serving an awesome God. still asking him the tough questions, and still loving and missing Alex more than anyone could know.

Kell

Wednesday, July 7, 2004 6:10 AM CDT

The photo above is off a little statue that Mary's sister-in-law Annette found and gave to us on the 4th of July. She spoke with someone to find out the colors of Alex's football team and painted the little football player with the ball to match Alex's uniform. This piece is now on our mantle and will always be treasured.

I have also posted a few new pictures of Alex on this site.

Still serving an awesome God. still asking him the tough questions, and still loving and missing Alex more than anyone could know.

Kell

Wednesday, June 30, 2004 7:39 AM CDT

Yesterday was Alex's 11th birthday. Even though he was not physically with us to celebrate, we felt his presence as we spent the day thinking of him, remembering all that we love about him and at the end of the day gathering with friends and family at the cemetary to reflect, honor him and sing happy birthday to him. Mary read a very touching message she had written to Alex, our pastor read scripture and said a few words,prayed and then we sang happy birthday and released balloons. We were very touched by the number of people that showed up to be with us in spite of the threatning thunderstorms in the area. We were meant to be there, because minutes before we were to meet there, the skies began to clear and several folks told us that they saw a beautiful rainbow as they were driving in.Thanks to everyone that was able to be with us yesterday and thanks to all of you who weren't able to be with us, but were thinking about Alex on his special day.

I want to end by sharing with you a short little word of wisdom and faith written by Billy Graham. I feel it is very powerful particulary at this time.

"I have found in my travels that those that keep Heaven in view remain serene and cheerful in the darkest day. If the glories of Heaven were more real to us, if we lived less for material things and more for things eternal and spiritual, we would be less easily disturbed by this present life.
This is not escapism, as some would argue. If anything, a firm faith in the future should make us more responsible in the present. All around us are people who never give a moments thought to Heaven or eternity. How will they learn of the future if we don't tell them in the present? The real escapism, I would contend, is refusing to face the future that God has prepared for us.
In the days of darkness and upheaval and uncertainty, the trusting and forward-looking Christian remains optimistic and joyful, knowing that Christ someday must rule, and "if we endure, we shall also reign with Him" (2 Tim. 2: 12)."

I have added a few photos of the gathering yesterday to this sites photo album

Kell

Tuesday, June 29, 2004 6:37 AM CDT

Happy Birthday Alex!!!!

We love you and miss you more than anyone could know.

I know you're busy spending time with Jesus and all the new friends you've met. I know Paw Paw, PaPa Ted, Uncle Danny and all the family that has gone before you are glad that you are with them.

As the Bible says, one day in heaven is like a thousand years on earth, and I told your mom and Taylor that by the time you even start to think about us or look for us, we'll be right there with you.

We find joy in the knowledge that you are with the Father and that we will get to spend eternity with you in His presence.

We Love You.

Dad, Mom and Taylor

Tuesday, June 22, 2004 6:57 AM CDT

June 29th is Alex's birthday. Taylor will be out of state at a wrestling camp and Mary and I will be spending the day together remembering Alex and doing things that he loved to do with us. We also wanted to give you an opportunity to remember Alex with us. At 7:00 p.m. Mary and I will be at the cemetary to remember and reflect, we will also be releasing balloons. If you can be with us, we would love to have you there, and if you would like, bring a balloon to release. If you live too far away, or can't make it maybe you can release a balloon from where you are or just think of Alex.

The cemetary has a sign out front that says it closes at 5:30, and there may even be a chain up accross the entrance, but we spoke with the folks at the cemetary and they said it would be okay for us to be there. If you are coming from Airline Hwy then just go to the next driveway after the main entrance to the cemetary and turn to your left, you will drive past an old house that serves as their office. This way will allow you to enter the cemetary and be with us.

Please let others know in case they don't visit this website.

I am going to try to add new photos of Alex here on the site, so look for them.

Still serving an awesome God, still asking Him the hard questions, and still loving and missing Alex like no one can imagine.

Kell

Tuesday, June 22, 2004 6:35 AM CDT

June 29th is Alex's birthday. Taylor will be out of state at a wrestling camp and Mary and I will be spending the day together remembering Alex and doing things that he loved to do with us. We also wanted to give you an opportunity to remember Alex with us. At 7:00 p.m. Mary and I will be at the cemetary to remember and reflect, we will also be releasing balloons. If you can be with us, we would love to have you there, and if you would like, bring a balloon to release. If you live too far away, or can't make it maybe you can release a balloon from where you are or just think of Alex.

The cemetary has a sign out front that says it closes at 5:30, and there may even be a chain up accross the entrance, but we spoke with the folks at the cemetary and they said it would be okay for us to be there. If you are coming from Airline Hwy then just go to the next driveway after the main entrance to the cemetary and you will drive past an old house that serves as their office. This way will allow you to enter the cemetary and be with us.

Please let other know in case they don't visit this website.

Still serving an awesome God, still asking Him the hard questions, and still loving and missing Alex like no one can imagine.

Kell

Thursday, June 3, 2004 7:52 AM CDT

I spent a great deal of my day yesterday mad and sad. I was thinking back on October 17th, 2003 the day the doctors gave us the bad news about Alex. I guess most 10 year old kids don't really know what leukemia is and I'm sure they don't spend much time thinking about it, but Alex had seen one of his grandfather’s die with leukemia. Even two weeks prior to October 17th when Mary was taking Alex to the doctor to see why he wasn't feeling so good, he said to Mary, "I sure hope I don't have leukemia." Alex had given blood to have it tested I think on October 15th to see what was going on. When Mary got the call from the Doctors office telling her something didn't look right and that we had an appointment in a couple of hours with a pediatric hematologist in New Orleans she was at school and it was about 9:00 a.m. I was working from my office in our home and Alex was at home with me sleeping because he wasn't feeling well and Taylor was in school. After Mary called me to tell me what the doctors said, I called my friend Ken and informed him of the situation and asked him to pray. I then had to go and wake Alex up and tell him we had to go get more test done in New Orleans. I did my best to conceal my fears and concerns so he wouldn't get upset. He didn't feel much like getting up and he wanted to know why we had to go, but he got up anyway, got dressed and waited for Mary to arrive from school. Once we got on the road, I remember that Mary and I tried to talk about everyday things to keep the conversation lite for Alex's sake and our. I was eaten up with anxiousness, I didn't want Alex to go through what I imagined he might go through and yet I wanted to get there in a hurry to put an end to all of this, after all this was all going to turn out to be a false alarm. After arriving and Alex giving more blood, it didn't take long and we were in the doctor’s office. After a quick exam the three of us sat there waiting to hear a simple explanation of why Alex hadn't felt good and what the quick fix was for it. With Alex sitting between Mary and me, Dr, Hodes said "I think we're dealing with leukemia here." I watched Alex put his head down, cross his arms and begin to rock back and forth in his chair without a tear and without saying a word, Mary began crying and I sat there numb just looking at Alex and Mary wondering how this could be. I wanted to punch Dr. Hodes in the mouth and take Mary and Alex out of there, but I was paralyzed. Dr. Hodes then said, "I'll bet Alex is wondering what we're talking about." and Mary explained to him that Alex was very familiar with the disease because his grandfather died from it just three months prior. This was not supposed to happen, we were God's children, and Alex was just a little boy none of this made any since. At that point we began talking very generically about treatments and how the disease was different in children than it was in adult. After maybe 29 minutes of this Alex looked at me and asked, "Dad when are we going home?" and I didn't have an answer for him. Dr, Hodes then said "Alex we're going to have to keep you here to start making you better, it's going to be a while before you can go back home." That's when it started to hit me that this was actually happening. Oh how I miss Alex. It's been 63 days since he went to be with Jesus and in many ways it's getting harder for us. I start my day usually around 4:30 or 5:00 just aching and crying over all of this. I hurt to my very core, it's as if the hurt is inside my bones, I feel like climbing the tallest mountain to just cry and scream and throw a fit where no one but God will see and hear me, but then for some odd reason, I want others to know my pain and I want others to miss Alex as much as I do. I still can't belief this has happened. I know that Alex is in Heaven now experiencing the Glory of God and all his promises. I know that we will see Alex again and that we will never be separated from him again, but oh how I long to hear his voice and give him a hug and spend time with him. I suppose I will ache and cry for the rest of my days in this fallen world, but my hope and faith is in the Lord and I look forward to the reunion.

Still serving an awesome God, still asking him the tough questions and still loving and missing Alex like no one can imagine.

Kell

Thursday, June 3, 2004 6:46 AM CDT

I spent a great deal of my day yesterday mad and sad. I was thinking back on October 17th, 2003 the day the doctors gave us the bad news about Alex. I guess most 10 year old kids don't really know what leukemia is and I'm sure they don't spend much time thinking about it, but Alex had seen one of his grandfathers die with leukemia. Even two weeks proir to October 17th when Mary was taking Alex to the doctor to see why he wasn't feeling so good, he said to Mary, "I sure hope I don't have leukemia." Alex had given blood to have it tested I think on October 15th to see what was going on. When Mary got the call from the Doctors office telling her something didn't look right and that we had an appointment in a couple of hours with a pediatric hematologist in New Orleans she was at school and it was about 9:00 a.m. I was working from my office in our home and Alex was at home with me sleeping because he wasn't feeling well and Taylor was in school. After Mary called me to tell me what the doctors said, I called my friend Ken and informed him of the ituation and asked him to pray. I then had to go and wake Alex up and tell him we had to go get more test done in New Orleans. I did my best to conceal my fears and concerns so he wouldn't get upset. He didn't feel much like getting up and he wanted to know why we had to go, but he got up anyway, got dressed and waited for Mary to arive from school. Once we got on the road, I remember that Mary and I tried to talk about everyday things to keep the conversation lite for Alex's sake and our. I was eaten up with anxiousness, I didn't want Alex to go through what I imagined he might go through and yet I wanted to get there in a hurry to put an end to all of this, afterall this was all going to turn out to be a false alarm. After arriving and Alex giving more blood, it didn't take long and we were in the doctors office. After a quick exam the three of us sat there waiting to hear a simple explanation of why Alex hadn't felt good and what the quick fix was for it. With Alez sitting between Mary and I, Dr, Hodes said "I think we're dealing with leukemia here." I watched Alex put his head down, cross his arms and begin to rock back and forth in his chair without a tear and without saying a word, Mary began crying and I sat there numb just looking at Alex and Mary wondering how could this be. I wanted to punch Dr. Hodes in the mouth and take Mary and Alex out of there, but I was paralysed. Dr. Hodes then said, "I'll bet Alex is wondering what we're talking about." and Mary explained to him that Alex was very familiar with the disease because his grandfather died from it just three months prior. This was not supposed to happen, we were God's children, Alex was just a little boy none of this made any since. At that point we began talking very generically about treatments and how the disease was different in children than it was in adult. After maybe 29 minutes of this Alex looked at me and asked, "Dad when are we going home?" and I didn't have an answer for him. Dr, Hodes then said "Alex we're going to have to keep you here to start making you better, it's going to be a while before you can go back home." That's when it started to hit me that this was actually happening. Oh how I miss Alex. It's been 63 days since he went to be with Jesus and in many ways it's getting harder for us. I start my day usually around 4:30 or 5:00 just aching and crying over all of this. I hurt to my very core, it's as if the hurt is inside my bones, I feel like climbing the tallest mountain to just cry and scream and throw a fit whare no one but God will see and hear me, but then for some odd reason, I want others to know my pain and I want others to miss Alex as much as I do. I still can't belief this has happened. I know that Alex is in Heaven now experiencing the Glory of God and all his promises. I know that we will see Alex again and that we will never be seperated from him again, but oh how I long to hear his voice and give him a hug and spend time with him. I suppose I will ache and cry for the rest of my days in this fallen world, but my hope and faith is in the Lord and I look forward to the reunion.

Thursday, May 20, 2004 12:09 AM CDT

I want to thank those of you who have made contributions in memory of Alex to Caringbridge. This site has been a wonderful tool for us to get the word out about Alex and to keep in touch with everyone of you, so thanks again for your continued support.

Over the last few days, I have been gathering our family photos and video so that I can scan and upload them to my computer. I have a movie maker program so that I can clean up some of the video and put together these little movies.

I am so thankful that we have so many pictures and videos of our boys. It also helps me to realize what a wonderful life that we have had. Although our pain is still very present, it does us good to see and hear Alex through these images.

I would encourage each and everyone of you, don't let a week pass you by without taking pictures and video of your kids and family. You will never regret it. As a matter of fact, I think back on all the times I wish I had taken pictures or video of the boys. One other thing, while you're in the car with your kids, turn off that radio talk show or that music and just enjoy talking with your kids. That is the perfect opportunity to do so. You can listen to the radio when you're alone in the car. I am so thankful that for the most part, but not all the time, we talk with our kids in the car rather than being distracted by the radio.

By the way I added a few new pictures of Alex to the photo page.

Still serving an awesome God, still asking him the hard questions and still loving and missing Alex like you'll never know.

Kell

Thursday, May 20, 2004 6:58 AM CDT

I want to thank those of you who have made contributions in memory of Alex to Caringbridge. This site has been a wonderful tool for us to get the word out about Alex and to keep in touch with everyone of you, so thanks again for your continued support.

Over the last few days, I have been gathering our family photos and video so that I can scan and upload them to my computer. I have a movie maker program so that I can clean up some of the video and put together these little movies.

I am so thankful that we have so many pictures and videos of our boys. It also helps me to realize what a wonderful life that we have had. Although our pain is still very present, it does us good to see and hear Alex through these images.

I would encourage each and everyone of you, don't let a week pass you by without taking pictures and video of your kids and family. You will never regret it. As a matter of fact, I think back on all the times I wish I had taken pictures or video of the boys. One other thing, while you're in the car with your kids, turn off that radio talk show or that music and just enjoy talking with your kids. That is the perfect opportunity to do so. You can listen to the radio when you're alone in the car. I am so thankful that for the most part, but not all the time, we talk with our kids in the car rather than being distracted by the radio.

Still serving an awesome God, still asking him the hard questions and still loving and missing Alex like you'll never know.

Kell

Wednesday, May 12, 2004 8:42 PM CDT

Hi Everyone,

Thanks for your continued support and prayers. It is only through the grace of God that we get through each day. We miss Alex terribly and he is always in our thoughts. I do best when I visualize him in heaven running and playing and getting all his questions answered. I just wish I knew exactly what he was doing up there. I guess that is just a mom thing. Taylor has been an incredible source of support and joy for both Kell and me. He is such a great kid and we are truly blessed to be his parents.
I went to school today and spent some time with my buddies and hanging out in the classroom. I even helped Liz write some IEPs. The old brain still works. It was bitter sweet, but helpful I think. I can't say enough how much we appreciate everyone's love and support. We love you all dearly.
Love,
Mary

Wednesday, May 5, 2004 12:21 AM CDT

It's been awhile since I last posted here, but I have been thinking of you all often. Your continued prayers and support has allowed us to walk through this very difficult time in our lives, and for that I thank you.

I can't even describe the enormity of the sadness we are experiencing over the loss of Alex while at the same time our hearts are filled with joy for how he blesed our lives and how we were so honored to chosen by God to be his parents.

It was 168 days from the day Alex was diagnosed with AML to the day he went to be with his Heavenly Father on April 1st. Those 168 days were filled with every emotion you can imagine, from fear and anger to hope and joy and everything in between and then some. 168 days, thats only 24 weeks. We didn't expect to be dealing with this, we sure as hell didn't sign up for it. We were told from the beggining that Alex could die from this, but we never thought 24 weeks later he would be gone.

During those 24 weeks Alex found happiness when ever and where ever he could and during that time for the most part he felt pretty good. He enjoyed all the visitors that came to see him and enjoyed getting to know all the doctors and nurses that took care of him. He was a happy boy.

He was blessed that during all of this, he never lost his identity. He still considered himself to be an active boy with dreams for the future. He was Alex Johnson the whole time and was planning ahead for our next camping trip and his upcomming football season and so many other things. Just 90 days before his death, Alex and Taylor and I were in our backyard throwing the football and having a wonderful time. With his hat covering his bald head you couldn't tell he had just been through Chemo. 90 days, man that's not much time is it. Like I said, even though we knew he could die from this, we were so hopeful that he would be healed.

Mary, Taylor, Alex and I did everything together. We have always been very close. People used to ask Mary and I when we were going to go on vacation together without the boys and we used to say, someday. But I really don't think we had any intention of doing so because it brought us so much more joy allowing them to be with us to explore and experience things together. We have so many wonderful memories of our many trips and vacations together. I am so thankful for that.

About two months ago I signed Taylor, Alex and myself up for a membership in a flyfishing club here in our area. Ya see we knew that Alex was going to have to stay away from sports for awhile so I began searching for other things that could capture his attention. Since we all love to fish, we decided to take it to the next level and learn flyfishing together. I know what you're thinking, flyfishing at 10 years old? Isn't that a tough thing for a 10 year old to get into. Well Alex, was always up for a challenge, and really enjoyed learning and doing things that not everybody and his brother was doing. Taylor and I are going to start attending the monthly meetings and go forward with the flyfishing plans that the three of us had made. Alex would want us to.

168 days are gone before you know it. We better all make sure we make the most of each and everyone of them. Hug your kids, tell them over and over that you love them and how much they mean to you and take lots of pictures and video tape of them.

Still serving an awesome God, but asking lots of questions!

Kell Johnson

Friday, April 23, 2004 8:35 AM CDT

"Death Is a Doorway"

On the "wings of death"
the "soul takes flight"

Into the land where
"there is no night"

For those who believe
what the Saviour said

Will rise in glory
though they be dead...

So death comes to us
just to "open the door"

To the Kingdom of God
and life evermore.

Every mile we walk in sorrow
Brings us nearer to God's tomorrow!

Friday, April 23, 2004 8:29 AM CDT

"Death Is a Doorway"

On the "wings of death"
the "soul takes flight"

Into the land where
"there is no night"

For those who believe
what the Saviour said

Will rise in glory
though they be dead...

So death comes to us
just to "open the door"

To the Kingdon of God
and life evermore.

Every mile we walk in sorrow
Brings us nearer to God's tomorrow!

Monday, April 12, 2004 4:27 PM CDT

Tomorrow will be a week since we burried Alex. Mary, Taylor and I were blown away by the number of people that honored Alex by visiting with us Monday night and by being with us during the funeral. I can't tell you how much that meant to us. We continue to make little baby steps as we deal with such a tremendous loss and I imagine we will struggle for some time to come. Both Alex and Taylor are so close to us and we did almost everything together so it comes as no suprise that at every turn are memories of Alex.

At bedtime there was always a fight between Taylor and Alex over the hall light. Taylor wanted the hall light off because the light was just above his door and he said it was to bright. Alex's room is down the hall and the hall light cast just enough light into his room to keep it from being pitch black. Usually Alex would go to bed first and many times he would be asleep by the time Taylor was ready for bed. Well this past Saturday night Mary and I decided to drive by the cemetary to check things out. The whole place is pitch black except for Alex's site where a night light from a nearby home cast a soft glow over Alex. It was if God were saying to us, "Don't worry, I'm taking care of him, I know what he likes." That was the event that gave Mary and I peace on Saturday night. I thought I would share that with you.

Serving an awesome God

Kell

Sunday, April 4, 2004 2:09 PM CDT

On April 1, 2004 our beloved son, Alex Johnson, won the battle and was proclaimed victorious as he went home to be with his heavenly Father. He was born in Baton Rouge, LA on June 29, 1993. His entire life was such a blessing to his mom, dad, older brother, dog Flash, and to everyone with whom he came in contact. He was a member of The Chapel on the Campus where he attended church and Sunday school. He was a student in the 5th grade at Dutchtown Primary and a member of the Prairieville Bronco’s Championship Football Team. His coaches and teammates nicknamed him “Buffalo”. He led the charge on defense as the team’s starting free safety. Alex was also the starting catcher on his baseball team. He was a fierce competitor in every aspect of life and was an inspiration to all who knew him.

Alex was preceded in death by his paternal grandfather Thomas Johnson, his maternal grandfather Ted Arthur, his uncle Danny Arthur and his aunt Tommie Johnson. He is survived by his parents Kell and Mary Johnson, his older brother Taylor Johnson, paternal grandmother Dorothy Johnson and maternal grandmother Maureen Arthur. He is also survived by seven aunts, Juanita Payne, Connie Golden, Lynda Marks, Ellen McWilliams, Susan DeMers, Annette Arthur and Peggy Arthur; six uncles, Rusty Payne, Jerry Golden, Peter Marks, Jeff McWilliams, Floyd DeMers and Teddy Arthur; and his cousins, Rusty Payne , Adrianna White, Charity Wilson, Joel Golden, Amy Breaux, Gerry Breaux, Wade Breaux, Courtney Breaux, Jonathan Marks, Ryan Marks, Kristen Argondizzo, Jeffrey McWilliams, Michael McWilliams, Catherine DeMers, Jessica DeMers, Cherie Arthur, Wayne Ebeling and Terry Harlan.

Pallbearers will be Peter Marks, Ted Arthur, Bob Wood and Keith Mayeaux.
Honorary pallbearers will be Alex’s’ uncle, Floyd DeMers, the coaches and players of the Prairieville Bronco’s Football Team and the 5th Grade Boys’ Sunday School Class from The Chapel on the Campus. Visitation will be held at The Chapel on the Campus at 3355 Dalrymple Dr. in Baton Rouge Monday April 5th from 5:00p.m. to 8:00p.m. and on Tuesday, April 6th from 9:00 a.m. till 11:00 a.m. Services will begin at 11:00 a.m. officiated by Dr. Dennis Eenigenburg, with a burial following at Resthaven Gardens in Baton Rouge.

We would like to thank the doctors, nurses and staff at Ochsner Hospital and Duke University Medical Center for their loving care and devotion to our son. They were truly the hands of God and will forever be part of our family. We would also like to thank all our family and friends who have rallied around us during this difficult journey.

Memorial gifts may be made to the Leukemia and Lymphoma Society or www.Caringbridge.com.

During the service there will be time for sharing your personal favorite happy and fond memories of Alex. For those that would like, the family encourages you to post those stories here as well.

Sunday, April 4, 2004 9:57 AM CDT

Friday, April 2, 2004 11:34 PM CST

Services for Alex will be held at The Chapel on the LSU campus, 3355 Dalrymple Drive. Driving directions to the church can be found at http://www.thechapelnet.com/about/map.asp

Visitation will be:

Monday, April 5 5:00pm - 8:00pm
Tuesday, April 6 9:00am - 11:00am

Funeral Services to follow at 11:00am

As a tribute to Alex and in celebration of his life, please share stories you have of Alex either through this web site or in a personal letter. This would be a precious gift for the family.

Gifts in memory of Alex can be made to the following:

* Leukemia and Lymphoma Society
8738 Quarters Lake Road
Baton Rouge, LA 70809

* Caringbridge - www.caringbridge.com

* The Child Life Department at Ochsner Hospital in New Orleans. Send donations to:
Oschner Clinic Foundation
1516 Jefferson Hwy.
New Orleans, LA 70121
Attn: Jamie Outlaw, 10th. Fl. Hospital
Hospital Child Life Department

Friday, April 2, 2004 8:55 PM CST

Services for Alex will be held at The Chapel on the LSU campus, 3355 Dalrymple Drive. Visitation will be:

Monday, April 5 5:00pm - 8:00pm
Tuesday, April 6 9:00am- 11:00am

Funeral Service to follow at 11:00am

Thursday, April 1, 2004 1:23 PM CST

Praise the Lord, O my soul, and forget not all of his benefits - who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's.
Psalm 103:2-5

Today at approximately noon, EST, with mom and dad at his side, Alex won the battle! He is the victor! ALEX WENT HOME TO BE WITH JESUS! He has been healed!

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.
II Corinthians 1:9-11

Wednesday, March 31, 2004 8:03 PM CST

Thanks to all prayer warriors who have faithfully remained on their knees for Alex today. There is really no change medically.

Mary and Kell are still VERY weary and need some rest. I (Kay W.) arrived today and hope to provide as much assistance as possible for them to sleep. (even if it's cat naps) They both are very hesitant to leave the room. Alex calls out for them quite often. The nurses and staff are wonderful and are doing their best to not only make Alex comfortable, but Kell and Mary as well.

Nana and Uncle Teddy will be leaving tomorrow morning to drive back to BR. Please pray for their safety as they travel. Also thanks from Mary and Kell to all who assisted in celebrating Taylor's birthday today. Happy 16th Birthday TAYLOR!!!!!

As I get new specific information, I will post or encourage Kell to do so. Details as of to date are on the last journal entry. Please continue to PRAY! God is in the business of working miracles and we're believing that He will heal Alex. May He continue to be glorified in all that is said and done.

For the Johnsons,
Kay Wallace

Tuesday, March 30, 2004 5:06 PM CST

Not just 10 minutes ago Mary and I came out of a meeting with Dr. Presad and the news was not good at all. It appears that Alex has no sign of cells in his bone marrow, so that means that the white count will not come up without devine intervention and a new transplant. They began a new medication to fight the virus, but it has not even been used here for this use. It has been used in other studies and in some cases has proved to be effective. When we asked what Alex's chances of survival were, we were told very slim.

Alex has not given up and Mary and I have not given up on him. When the nurse came in to administer this new medication for the virus she showed it to me and as I held this medication in my hand, the nurse asked me, "Do you want to pray before I give the medication that this new medication would work. She took Alex by the hand and I held up this medication and prayed over the medication and Alex, that this medication would be a God send. Please be praying with us that we would see fast positive results from this medication. We are told that Alex may not be able to hold on much longer.

We were asked again if we wanted to recesitate him if it came to that, and I told the Dr. I was not ready to make that decision. Please pray that we will not have to make that decision, that Alex will make a miraculous turn around . When asked if there was a possibility that this new medicine could work and we could see a turn around, Dr. Presad said yes there is a possibility that this could work for him.

As the meeting ended I read 2 Corinthians chapter 1 vs, 9-11 to Dr. Presad and Marian the social worker. I just felt like I needed to tell them where my hope was. I'm certain that they never questioned where my hope is, but I wanted to read it out loud to them.

Pray Pray Pray. Alex is fighting so hard and he has much left to do in this life. A dear friend reminded me today that when Jesus arrived to see Lazarus, it was assumed that he was too late, but we all know that his timing was perfect.

This friend also told me one day that we need to stop telling God how big our problems are and start telling our problems how big out God is.

Please pray for Alex, I know you will. I will give more details on Alex as they develope.

Kell

Monday, March 29, 2004 6:44 PM CST

I spoke with Mary a while ago and she said the bone aspiration went well and that Alex is a real trooper. They probably won't have the preliminary report until tomorrow and it will take a couple more days for a full report. Mary has been very encouraged by Alex's alertness today. He has been able to ask for what he wants and seems to be comfortable. Kell is flying out of N.O. as I write and will be with Mary and Alex tonight.

Continue to pray for:
* report to show 100% donor cells;
* the white blood cells to grow;
* virus to be defeated;
* Alex to continue to rest comfortably;
* Alex to gain strength;
* Kell's safe arrival tonight;
* rest and peace for Mary and Kell;
* comfort and peace for Taylor;
* God to be honored and glorified.

As I spoke with Kell and Mary today a song kept running through my mind that says: "There is HOPE in the name of the Lord, There is STRENGTH in the name of the Lord, There is POWER in the name of the Lord, Blessed is he who comes in the name of the Lord." Be encouraged that God is answering prayers and continue to lift Alex to our Lord Jesus Christ.

I will update as soon as I get news.

Susan Mayeaux
(For the Johnsons)

Monday, March 29, 2004 9:28 AM CST

God is in the business of answering prayer. Thank you to all who have been so faithful to pray for the Johnsons. Monday morning has brought some good news! Mary and Kell are encouraged after a long, hard weekend.

This morning, when the nurse tried to awaken Alex, he immediately openned his eyes and began to look for Mary. He is reponding to questions, even talking a little bit and is resting very peacefully! YEAH!!!!

Medically the updates are:
*Alex will have a bone marrow aspiration today at his bedside.
*Mary will undergo another round of being "pheresised" tommorrow morning at 10:00 a.m.
*Plans are underway to begin a NEW medication for the virus.
*Alex will NOT be given Mary's granulocytes today, so that the WBC will give them an accurate reading for Alex's blood tonight.

Uncle Teddy and Nana arrived on Sunday to be with Mary, Kell and Alex for a few days. Uncle Peter and Aunt Lynda arrived on Sat. and will return home on Monday afternoon. They all were able to celebrate Taylor's 16th birthday with a cake before Kell and Taylor came to Baton Rouge on Sunday evening. (His birthday is Wed., March 31st) Taylor will be staying with the Kearneys for the week. Kell is returning to Duke on Monday evening. (He's trying to find a quicker flight but plans are now for a 7:00 p.m. departure.)

Prayer requests are specifically for:
1) Alex to continue to rest peacefully
2) New medication to wipe out this ugly virus
3) WBC reading to be increased tonight
4) Peace for Taylor as he is away from mom, dad and Alex
5) Renewed peace and strength for Kell and Mary
6) A quicker flight for Kell

Thanks again to all who have come along side the Johnsons through this horrendous journey. They covet your prayers, your support and your love. Their desire is that God Almighty continue to be glorified in all that is said and done. May we all look expectantly to the miracles that God is doing even as we speak.

For the Johnsons,
Kay Wallace

Saturday, March 27, 2004 5:16 PM CST

Alex had another chest xray today to determine problems. It looks the same as before, however, they don't know whether its additional fluid or infection. At this point, the doctors have decided to treat Alex for both. He had some heart fluxuation yesterday, but this was determined to be air pockets in the chest tube. There is no overall improvement currently, but Alex is resting comfortably and is not in much pain.

Tenative plans are for Kell and Taylor to fly home tomorrow (Sunday) with Kell returning to Duke almost immediately. Kell's sister and brother-in-law arrived today.

The new development is that Kell and Mary are both being tested for compatible bone marrow for Alex. Although they were not compatible before, the doctors are seeking to find the closest of the two to aid in Alex's recovery.

Kell has asked that we all pray specifically for:
1) White blood count to increase
2) The virus to be resolved
3) No additional infection
4) Improved lung activity
5) Peace for Taylor as he returns to Baton Rouge
6) Faith, Peace, Strength, and Wisdom for them all
7) Kell and Mary are EXTREMELY WEARY and desperate for some good news.

Please join with the body of Christ in prayer and belief that the Lord knows just what Alex needs and His desire is to provide the very best for Alex. We ask God Almighty to pour out His peace and protection on the Johnsons as they journey down this very difficult road and may He continue to be glorified.

For the Johnsons,
Kay Wallace

Friday, March 26, 2004 8:04 PM CST

This morning for the first time, Mary was able to be "pheresised" (giving blood to be processed to remove the granulocytes for Alex). Upon her return to Alex's room, she was greeted by Rodney Wood, a pastor friend from Baton Rouge. Kell, Mary and Rodney had a great visit this afternoon complete with a sweet, precious time of prayer over Alex. Kell and Mary were very encouraged.

Shortly after Rodney left, the doctors requested a meeting with Kell and Mary. The medical team is concerned about a slight change in the amount of fluid around Alex's lungs and his breathing pattern seems to be a bit more labored.

Therefore, a call to the troops to PRAY! Specifically,
1) that the white blood count would increase
2) that the problem with Alex's lungs would subside
3) that peace would prevail over the entire Johnson family
4) wisdom for the doctors
5) that God would be magnified through all that is said and done as the Johnsons walk down this very difficult road.

For the Johnsons,
Kay Wallace

Thursday, March 25, 2004 9:22 PM CST

Mary's "central line" procedure went well today and she is back in the room with Alex now resting comfortably. She was delayed until late afternoon getting to surgery, but it all went very smoothly and she's very excited about being able to give Alex a part of her blood,(granulorcytes) beginning tomorrow morning. She will give the blood twice a week. (Actually they take her blood, process it to take out the gran. and give it right back to her.) Then Alex will receive a portion of the gran. every 6 out of 7 days. This will enable him to fight off any fungal or bacterial infection IF he should get one.

Alex had a very restful, peaceful day. He currently has NO fever and is responding quite a bit to Taylor and Mary. Praise the Lord!

Kell, Mary, Alex and Taylor are all enjoying their time together. Big plans are underway to celebrate Taylor's "16th" birthday this weekend. They are also excited about Uncle Teddy and Nana coming on Monday, March 29th for a few days.

Kell and Mary are so grateful that Alex's doctors are taking a proactive approach with Alex's treatment. They ask that we continue to pray for these doctors and nurses wisdom, as they seek to provide the best medical care for Alex.

Please continue to pray for the white blood count to increase, and that peace would prevail over the entire Johnson family. Kell and Mary continue to lift up their eyes to the Lord and their desire is that God Almighty would be glorified.

For the Johnsons,
Kay Wallace

Wednesday, March 24, 2004 8:56 PM CST

Kell and Taylor arrived safely in Durham this afternoon. Kell and Mary met with the doctors who were very supportive. Alex needs the white blood cells to grow to fight the virus. As a preventive measure for any possible future funigal or bacterial infection Alex will receive granulocytes taken from Mary's blood. (This will not fix any problems Alex is experiencing now, it will simply be a preventive measure. He has nothing to fight a funigal or bacterial infection should he get one.) Tomorrow morning Mary will undergo an outpatient procedure putting in a central line similar to Alex's. She will be under anestheia a short while, then recovery, then back up to Alex's room. As I understand it, they will process her blood somehow and from this Alex will receive the granulocytes.

Mary would like to thank Alex's "Best Buddy", Whitney, for all her wonderful help and support.

Mary also asks that you continue to pray for wisdom for all the doctors and nurses who care for Alex and all the other children on the floor. Mary said they have been so supportive and are doing everything they can to help Alex and keep him comfortable.

So, specific prayer requests tonight and tomorrow are:

* For white blood cells to grow;
* For Mary's procedure in the morning;
* For wisdom for doctors and nurses;
* For renewed strength for Mary;
* For sweet family time together;
* For God to continue to be honored and glorified through this trial.

Will update as get more informaton.

Susan Mayeaux

Wednesday, March 24, 2004 5:03 PM CST

I don't have much new medical information on Alex at this time, but wanted to say Mary seems to be doing better. She said she can feel everyone's prayers. Alex had a brain scan earlier today to look for bleeding, and everything is normal. Mary was very encouraged by this. Alex was awake during the scan and asking questions. The kidneys are showing some signs of stress, but are OK at this time. It seems the problem remains in the liver, gall bladder and small intestine. Alex desperatly needs the white blood cell count to go up to fight the virus. The bleeding seems to have subsided some at this time. Kell and Taylor are due to arrive around five this afternoon and Mary and Kell will meet with the doctors at 6pm.

Please continue to pray for the white blood cells to make their grand entrance and for peace for Alex and the entire family. I will update again as I receive new information.

Susan Mayeaux

Wednesday, March 24, 2004 6:16 AM CST

I just received a call from Kell asking me to update everyone and to ask for your prayers. Kell received a call from Mary at 5am this morning saying Alex was spitting up blood, he was very disoriented, and there was blood in his stool and stomach. He said he had never heard Mary the way she was this morning. He's not sure what is going on with Alex. He and Taylor will fly out today at noon. (They were scheduled to fly out Friday and spend the weekend celebrating Talyor's 16th birthday on the 31st.)

Kell once again expressed how alone and abandoned he feels at this time, but still is praying for a miracle and knowing God is in control. He asks for your earnest prayers now for Alex and his family. He never thought they would get to this point. He said Alex is still fighting and that he got on the phone with him this morning to pray with him. Mary told him that he was listening very intently.

Please pray for Kell as he must now wake Taylor to explain what is going on, prepare to leave, and then wait for a flight at noon. I know he would like to be at Mary and Alex's side immediately. There is no family or friends with Mary at this time, so please pray she can hold it together till Kell gets there.

We obviously do not know God's plan in all this, but continue to pray that God would be honored and glorified through the lives of the Johnsons and the trial they are enduring. Pray for a peace for all of them that passes all understanding.

I will continue to update as information is known.

Susan Mayeaux
(Friend of the Family)

Sunday, March 21, 2004 9:55 PM CST

Friday evening Keith Mayeaux took Taylor and me out in his boat for a late afternoon boat ride and I have to say it was great to just feel the wind in my face and just relax for a couple of hours. As we were boating we saw one of the most beautiful sunsets that I have seen in a long time. If Mary had been with us she would have said, "This is my favorite time of the day." So many sunsets we've viewed together, most of the more memorable ones have been on camping trips with Taylor and Alex while on a lake or at the beach. I found myself wishing desperately that they were there with us to enjoy the moment.

Saturday morning, Mary received the news that a little fella with many of the same issues that Alex is dealing with passed away late Friday night. Mary had gotten close to the mother over the last several weeks and was devistated at the news. The mother was a strong Christian woman and it makes it very difficult when you see first hand that not all of these stories end in the way we think that they should.

My faith is as strong today as ever and I stand strong in the knowledge that Our God has the power to speak a healing into existance if he so chooses. The difficulty I have is, what if he chooses not to heal. I have to tell you that scares the heck out of me. Taylor and I watched part of a documentary last night about Angola Prison and we watched people in prison that were murderers and thieves and drug dealers and rapeist and they were all healthy as could be and I couldn't help but ask why an innocent 10 year old boy who's only desire right now is to go outside and play is going through such pain and such a tremendous struggle. I guess we all have our prisons in life.

Saturday night Taylor and I went to see The Passion of Christ with my mom. What a powerful movie. At the very beginning of the movie they displayed 1 Peter 2:24 "He himself bore our sins in his body on the tree, so that we might die to sins and live for rightousness; by his wounds you have been healed." I found myself repeating over and over again in my head, "by his wounds you have been healed." As the movie went on I found myself claiming that promise for Alex not only spiritually and emotionally but physically as well. I watched as Jesus was beaten repeatedly for the sins of the world and all I could see was the cruelty and wickedness of the world, but more than that was the love that he had for us that allowed him to lay down his life for us. I looked at his body and how his flesh had been ripped apart and I thought what a pitty it would be for someone to see what he had done for us and what he was offering us and for them not to receive that gift. I found myself thanking him and receiving him all over again and holding on to the promise that "by his wounds you have been healed."

At the end of the movie we sat there in silence and didn't move a muscle, and I began receiving and claiming his promise and just focusing on receiving his promise not only for me but for my entire family.

Mary, Taylor, Alex and I are in a place of total dependancy on God. This is probably the first time in my life that if I'm totally honest, I can say that God is all we have and yet God is all we need. I have no choice but to trust God, there is no other way. I am not thrilled with the route we took to get here, but it does simplify things in many aspects. God is all we have. When Alex comes through this, there will be no doubt that it was by the hand of God.

This morning, I was making an attempt to get ready for church, but was having a tough morning. Part of me wanted to go, but part of me wanted to stay home. As the time drew near that I really needed to get on the stick to make second service, Mary's brother Ted and sister-in-law Annette stopped by to pick up a pressure washer. Well for the next hour and a half we stood outside and talked about Alex and how we were all seeking God for answers. After they left I immediately felt that I needed that conversation with them, I found my spirits lifted after they left.

Even though Alex is very sick, the doctors still seem to be amazed at how well he is doing under the circumstances. Mary and I agreed today that it was because of God's grace allowing him to endure. I'm sure we will all continue to have our ups and downs and that our faith will be tested through out this process, but I know that because of our prayers and your prayers, God will continue to bless us even when things are very difficult.

I know I don't even have to ask, but please continue to lift us up especially Alex as we continue this journey to his complete healing. We need white blood cells to make a grand appearance in a big way in the next 10 days and we need that stinking virus to disappear.

Serving an Awesome God

Kell

Saturday, March 20, 2004 5:37 PM CST

This past week Alex received a stem cell boost in hopes to create some white cell growth. We are really in desperate need of these white cells to grow. The doctors are going to give it two weeks and then they say if we don't see anything happening that we need to talk about another transplant. We need a miracle here in order to keep Alex from having to go through this all over again.

Another precious child passed away last night. He was dealing with some of the same issues Alex is dealing with. Pray for Mary, this was very difficult for her, she had grown close to the mother.

I am trying to make sense of all of this, but am having a very difficult time today seeing any of God's glory in this. Yet I feel guilty for even saying that.

Please continue to pray. I will continue to update.

Kell

Friday, March 19, 2004 5:40 AM CST

I can't tell you how much your prayers and thoughts mean to us. Your words of encouragement have truly lifted us up.

I have a big assignment for you prayer warriors and this is for all the kids in the bone marrow transplant unit. I just learned that about 13 of the 16 kids on the unit have this virus and that is bad. We need to come against this virus in prayer so that not only Alex will be free of it but that all these precious children can move forward with their recovery. This virus is literally standing in the way of these kids moving forward with their recovery. Some kids have been admitted to Pediatric Intensive Care as a result of this virus. We certainly don't want Alex in intensive care. Your prayers have made a difference for Alex would you please continue to pray for him and for all of these children in his unit. These kids are trying so hard to hold on. Please pray for the parents as well I know what they are all going through and all you want is for your child to feel better and to move forward with their recovery.

Next weekend Taylor and I are going up to Duke and Alex is so excited. Taylor's birthday is March 31st and Alex has been planning with Mary a few surprises for Taylor. It has been about a month since Taylor has seen his mom and brother. This is really beginning to take its toll on Taylor as it is with all of us.

I do want to encourage you though. Your prayers and thoughts as well as your posting here on this message board have been a tremendous source of strength for all of us. Every day we read each post and feel your love and recieve blessings from each one of them. God has been with us and blessed us as a result of your prayers. When I spoke with Alex last night only for a minute I could tell that his voice sounded a little stronger so please be encouraged.

Take time today to think about Alex and to pray for him and while doing so take time to thank God for all he has done for Alex and for Mary, Taylor and me. I also want you to think of how God has used you in this and how he has blessed us and you through your obedience. We have come together and are developing into a stronger body as a result of all of this. Be encouraged that God is using you. Be Bold and Be Strong for The Lord Thy God is with You. Do not be affraid, do not be dismayed, walk in faith and victory for the Lord your God is with you.

We have a wonderful opportunity here to allow God to do miraculous works through us and through this situation. The eyes of many are upon us. Some know the Lord and some don't. Some are believing with great faith for Alex and expecting wonders to happen on his behalf. Others are watching very closely to see if God does act in this situation. We are all on a great journey and our weapons are being made strong to not only finish this battle and to raise the flag of victory but to face many other battles in the future on behalf of others. Individually without Christ we are hopeless. But when we all come together in Jesus Name we are a Mighty Army able to move mountains and show the world the love and power of Christ living within us. We don't face this alone, we have the King of Kings and the Lord of Lords leading the charge and claiming new ground for us every moment of the day. Please join me today in claiming victory for Alex and for the entire Bone Marrow Unit these kids need us standing in the gap for them.

As always we love you all and thank you for everything you have done out of love for Alex. I want to thank the church we attend, The Chapel for all of your love and support, even though we don't get to spend much time with you these days, we feel closer to you than ever before. You have stood with us from day one and continue to allow God to bless us through you. We love you and look forward to the day when Alex, Mary, Taylor and I enter the doors of The Chapel to rejoice and give thanks to our Heavenly Father. Oh what a day that will be and what a testimony we will have for the world.

Serving an Awesome God

Kell

Thursday, March 18, 2004 12:47 AM CST

Quick update. Alex is receiving his boost as I write. He let me out of the room for a few seconds to let everyone know. We are also waiting for results from a high density scan of his gall bladder, liver and intestines. The doctors are trying to get a better idea of how Alex's gut is processing. Please continue to pray for the doctors as they continue to look for avenues to help Alex. We continue to be overwelmed with everyone's love and generousity. We love you all.
In Christ,
Mary

Wednesday, March 17, 2004 5:43 AM CST

This website has been a wonderful tool allowing us to communicate to you how Alex is doing and what his, as well as our needs are. We have rallied the troops in times that we needed specific prayer and we have posted the results of God answering those prayers.

Our prayers have gotten results and they will continue to get results, I just need to make sure that I continue to give you the reality of Alex's condition so that you can pray spcifically. This is my second time to try and post this message this morning and I am determined to get it out to you. I am determined because I have a feeling Satan would love nothing more than to distract me and you from comming together in prayer because he knows that through our prayer and faith and the sacrifices of our Lord Jesus Christ that he is defeated. We need to claim our victory and we need to claim victory for Alex.

Today Alex is in need of your prayers so I am here to rally the troops on his behalf that we would go before God seeking miraculous things. We have a battle to fight and we need to put on the armor of God, saddle up and take the fight to the enemy. This is a battle cry. It's not pretty, but the reality is we have to stand firmly for Alex and fight with him every step of the way.

Alex is in pain and is completely miserable. He has a tube down his nose to drain his stomach. The tube keeps getting clogged and they have to keep replacing the tube. This causes him pain and a tremendous amount of anxiety when he knows they have to change out the tube. He has a chest tube coming out of his side to drain fluid from around his lung. This is uncomfortable and limits his mobility and the ability to get comfortable in bed. He has tubes coming out of his chest where he recieves his medications and treatments, all of this compounded is making him very uncomfortable.

Because of the virus his gut hurts and he has to be continuouly medicated to ease the pain. The virus is supressing the white blood cells from growing, yet we need the white blood cells to grow to get rid of the virus. (This is an area that needs special attention during your prayer time, we need to see miraculous results here)

Because of all of this Alex continues to be fed through a tube, he hasn't eaten in several days, going on weeks now. His weight has dropped and his strength and muscle tone has weekened.(Please pray for his strength)

The virus has also been harsh on his gall bladder and his liver causeing him problems. His skin tone is very yellow.

He is very nervous and anxiuous causing him to breath in almost a panting manner. Remember he is just a 10 year old boy, I can't even imagine what he must be going through both physically and mentally.

He rarely talks now and sleeps most of the time and it is very difficult for a parent when they can't communicate with one of their children.

This has been especially tough for me. Alex and I have always enjoyed talking with each other. We talk sports and talk about our many adventures while on family camping trips and other travels. We talk about movies and just silly stuff that a dad and his son talk about. This has been taken away from us and my heart is broken as a result. A dad needs to be able to have conversations with his children and those children need those conversations with their dad. Alex has always called me on my cell phone during the day just to talk. He would ask how I thought the Tigers were going to play during the weekend, or just call to tell me he saw a commercial advertising a movie he wanted me to take him to see. He would always call me around 4:00 to ask me when I would be home. I cherish those calls and always made time for them. I hurt deeply that we don't talk.

I am lonely for Mary and my seperation from her aches. Taylor misses her and longs to spend time with his brother.

Alex has fought like a courage warrior, but he is in need of a break. I feel as though we are stuck in the mudd and as we struggle to dig our way out, it continues to rain as the mudd refuses to loosen it's grip. We need God to stop the rain and cause the mudd to loosen it's grip on Alex.

Please take time to pray for Alex as soon as you finish reading this and pray for him all during the day and night. I know that through our prayers God will give us the victory.

Serving an Awesome God

Kell

Sunday, March 14, 2004 11:04 AM CST

We continue to praise God for the work he has done for Alex as a result of the prayers of many. Even though we have much to be thankful for, we remain steadfast in praying for every step of Alex's healing. There really hasn't been much of a change in his condition since the last post, but we are praying that God will grow those white blood cells and that He will cause that virus to be defeated.

Since October 17th of 2003, God has really dealt with me and has revealed many things to me concerning my walk with him. The one thing that comes to mind today is how he has brought me to a place of total dependency upon Him. In the past, I had a tendancy to try and handle most everything in my life on my own and only rely on God for the big stuff in my life. God has shown me that not only do I need to rely on him for the big stuff, but that I need to bring the small stuff to him as well. Thw wonderful thing about doing this is that, I have also learned to praise him not only for the big stuff, but for the small stuff as well. I praise him and trust him for every breath, for every moment and for every lesson he is teaching us through this journey.

Last night while I was processing all of the trying events we've been through since October 17th in my mind, I can honestly say that God has met us at every crossroad and has supplied answers to every question and need. With every need and every prayer God has tested and strengthened our faith.

About a week and a half ago I was at home, it was about 2:00 a.m. and I was pacing and praying. I was feeling very anxious and alone. I felt that God was hidding from me and Alex was in need of his touch. I was feeling as though God was withholding his touch and I felt like I was in a very dark place. I prayed, "Father, I have to confess to you that right now I can't see your light at the end of the tunnel, I feel as though I am in total darkness. Please Father allow me to see your light, restore my faith and my hope." Well sometime after that I eventually went to sleep. Around 7:00 Mary called and informed me that they saw white cell activity and were very encouraged. I began rejoicing and thanking God for this news. Later that morning I went to Alex's website to read some of the post and I read a message from my dear friend Stephen Street. He was rejoicing as well at the good news of the morning, but the last thing that he wrote I believe was inspired by God. Stephen and I hadn't talked in a few days and he surely didn't know my thoughts and prayers from the sleepless night before, but God chose to speak to my heart through the words Stephen wrote. He wrote, "I know you guys have a ways to go, but God has shown you His Light and given you his hope." What a blessing that was.

Please continue to pray for Alex and our entire family, God is doing a mighty work in our lives. As always we love you and praise God for giving us such tremendous support through each and everyone of you.

Serving an Awesome God

Kell

Saturday, March 13, 2004 6:53 AM CST

Good Morning,

It felt so good to post some good news the other day. I ran to the computer as soon as I hung up from Dr. Prasad and the poor man had to get the nurses to track me down. Not long after we were told Alex would be getting a boost, the Drs. got together and decided to try something different. Alex has been getting a medication, Growth Colony Stimulating Factor (GCSF) post transplant for several weeks. The Drs. decided to try doubling the dose in hopes that it will stimulate cell growth. If this does not word in about a week, he will then receive the boost.
He still feels pretty bad and is very week. Yesterday, the physical therapist came by and he walked to the chair an did some leg and arm exercises. He was not happy about it and let us all know, but did everything that was asked of him. He's such a champion and everyone here is so impressed by him. Lynda went home yesterday and Kell flew in. Alex is really looking forward to seeing him. Thank you Cindy and Craig Corie for the frequent flier miles. Your generousity overwelms us! Thanks also to Kyle Williams and Clair Gowdy for the autographed LSU football. It brought a smile to Alex's face and a tear to my eye. You all are great and we love you, love you, love you!!!!! Please continue to pray for the doctors and nurses who care for Alex. As my dear friend Susan Mayeaux said, Alex is keeping the drs. on their toes and the rest of us on our knees.

Love,
Mary

Thursday, March 11, 2004 3:24 PM CST

100% DONOR CELLS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Praise God. Thank you for all your prayers. We will be getting a boost of stem cells soon, which will hopefully help fight this nasty virus. We're still not out of the woods, keep the faith. Love you all.
Mary

Wednesday, March 10, 2004 6:46 PM CST

Hi Everyone,

Dr. Prasad just called. The good news is that after a more sophisticated test was done on the bone marrow aspiration, there are more cells in the bone marrow than expected. Unfortunately, we will not know whose cells they are until probably late Friday afternoon. At that time the doctors will decide on a plan of action. Alex's bilirubin is still rising which is of concern. Please continue to pray that the medications he is receiving will have some positive effect and that cell growth will improve. He is still pretty uncomfortable, but not in intense pain. He enjoyed watching a new movie his Aunt Lynda bought him today. Thanks for your continued prayers and concern. We love you all.
Love,
Mary

Tuesday, March 9, 2004 9:23 PM CST

Alex is resting and Mary is in the hotel room for the night. My sister Lynda is with Alex which means he is in very good hands. Today they did another bone marrow asperation to see what is going on with the cells. Tomorrow we should know what the cell activity is and who's cells are growing. They can actually tell if it's Alex's cells or the transplanted cells that they saw the other day. The Doctors say we want to see transplanted cells instead of Alex's cells. So here's your prayer asignment for tonight and Wednesday. We need verification of cell activity and we need it to be transplanted cells. If it's Alex's cells they're talking about more chemo and we don't want that. If it's the transplanted cells, then they are talking about giving him a boost. From what I understand, they saved some of the cored blood that Alex was given so they can give him a boost if he needs it. I'm not sure of all that is involved, but let's just all pray and believe that the news is good. Alex needs a break, he's been fighting hard, but every warrior needs time to recharge his or her batteries. When we were in the early stages of this, I told everyone that he was the most courageous 10 year old I had ever seen, but I really need to change that. I can truly say that Alex is the most courageous person that I know, and he has been an inspiration to me. Please pray with me tonight, that the test results would be good and that we get confirmation that we are moving in the right direction.

As always we love you and thank you for your prayers and thoughts.

Serving an Awesome God

Kell

Monday, March 8, 2004 10:21 AM CST

Good Morning,
Alex is resting peacefully as my sister Ellen keeps an eye on him. We are so fortunate to have such great family support. Ellen flies out today at 5 and Kell's sister, Lynda will fill in her slot. Even though Alex doesn't feel very well, he has enjoyed having visitors. At this point, he is holding his own. His counts are the same. We will have a bone marrow aspiration this week to see exactly what is going on with the white blood count. We are just in a holding pattern at this time. Waiting to see if the medications kick in and get a hold of the virus and graft vs host. Will write later if anything new develops.
Love,
Mary

Saturday, March 6, 2004 1:07 PM CST

Please continue to pray that the adeno virus would be resolved, this seems to be the main concern at this time. It is a tough virus to deal with, but I know our God is much bigger than this virus.

Yesterday Alex waited all day to have his catheter put in and it finally happened about 5:00 p.m. The surgeon decided to put in a chest tube instead, which is a little bigger, but they feel better suits his needs. At that time they drained 1 1/2 litters of fluid from around his lung. X-Rays this morning show that it is working well and that his lungs are in very good shape. Alex is having a bit of discomfort with this new line, but they say he will eventually get used to it. He seems to be resting fairly well considering and he's back to enjoying watching television, especially ESPN. Mary was able to get to the hotel last night around 11:00 p.m. and sleep until 6:00 a.m., that's probably the most sleep she's had in one stretch in some time. Alex's count is back down to 0.1, but the doctors are not concerned, they are still very pleased that they saw activity yesterday, it will come back again. So far Alex has responded well to everything they have done and that is a very good sign. the bili-rubins in his liver have seemed to stabalized and the doctors are pleased with that. As Dr. Presad tells us, this is just a bump in the road, keep up the good fight.
I will update as I get more news.

Serving an awesome God

Kell

Saturday, March 6, 2004 10:45 AM CST

Yesterday Alex waited all day to have his catheter put in and it finally happened about 5:00 p.m. The surgeon decided to put in a chest tube instead, which is a little bigger, but they feel better suits his needs. At that time they drained 1 1/2 litters of fluid from around his lung. X-Rays this morning show that it is working well and that his lungs are in very good shape. Alex is having a bit of discomfort with this new line, but they say he will eventually get used to it. He seems to be resting fairly well considering and he's back to enjoying watching television, especially ESPN. Mary was able to get to the hotel last night around 11:00 p.m. and sleep until 6:00 a.m., that's probably the most sleep she's had in one stretch in some time. Alex's count is back down to 0.1, but the doctors are not concerned, they are still very pleased that they saw activity yesterday, it will come back again. So far Alex has responded well to everything they have done and that is a very good sign. the bili-rubins in his liver have seemed to stabalized and the doctors are pleased with that. As Dr. Presad tells us, this is just a bump in the road, keep up the good fight.
I will update as I get more news.

Serving an awesome God

Kell

Friday, March 5, 2004 5:27 AM CST

We Have Some Evidence of Cell Growth!!!!!!! The nurse came in at 2 this morning to tell us Alex's white blood cell count is 0.2. It has been hanging at 0.1 since we got here. The poor girl, I think I hurt her when I jumped up and hugged her neck. All the other nursed were outside dancing. We still have a way to go, but this is certainly a step in the right direction. The thoraxic surgeon came by last night and it was decided to put a catheter in Alex's chest to drain the fluid around the lungs as necessary. This should help him rest and not have to work so hard to breathe. The doctors said they were really surprised that Alex was not requiring more oxygen with the amount of fluid on his lungs. THey said that was due to the fact that his lungs are so healthy. He had a pretty peaceful evening and is not anxious about the procedure this morning. Will update later.

Love,
Mary

Thursday, March 4, 2004 4:57 PM CST

Hi Everyone,

Sorry it's been a couple of days since we updated. Things move so quickly here and the day is over before I know it. Please know that checking the website each day is such a source of comfort and encouragement to us. Thank you for remembering us in your thoughts and prayers.
Alex is still pretty sick. THe doctors tell us the recovery time will be slow. We continue to wait and pray that the medications are successful in treating the Adeno Virus and the Graft vs. Host. At this time the kidneys are holding their own. The doctors are a little more concerned about some fluid outside the lungs. It may have to be tapped off again by the thoraxic surgeon. We are waiting for him to come look at Alex right now. Have to go.
Love,
MAry

Tuesday, March 2, 2004 9:55 AM CST

I can be glad that my hope is in the Lord, because he gives a confidence that this world doesn't know, he's the Lord of all creation and whatever the situation, I'm glad that my hope is in the Lord.

Last night Mary and I met with Alex's Dr. and the picture of what is going on is becomming more clear. The bad news is that we have issues we had hoped we wouldn't have to deal with, but the good news is that we have a plan to address the issues. It's pretty clear that Alex has Adenovirus in his intestines and they feel that is is isolated to one small area. There is evidence that the Adenovirus has caused damage to his intestine, but the good news is that the damage can be repaired. The drug they have chosen to use to treat the Adenovirus can cause problems with the kidneys. In some cases it has caused kidney failure, but from what we have been told, we have to take this risk.

The other issue we have going on is that Alex is believed to have GVH (Graft Versus Host) and this is dealt with with a different set of drugs. This can also cause damage to the liver If there is an up side to the GVH there are some studies that show that those that get GVH have less of a chance of relapse.

The other issue is that with the Adnovirus, the GVH and the immune supressive drugs used to treat these things, the counts can be supressed which in some cases can cause a rejection of the transplant. If this were to happen a second transplant is done.

This is the most recent news that I have. Dr. Prasad is a very good doctor and does such a wonderful job of explaining the situation and of being very honest of what can happen both positive and negative.

Alex really needs your continued prayer and specifically for the issues I just mentioned. Please pray for protection od his kidneys and liver as well as his intestine. Please cover his entire body with prayer because as we've learned the whole body can be affected by these issues and medications. Please pray that his lungs remain healthy and free of any problems.

At this moment Mary and I are dealing with the hand Alex has been dealt on a moment by moment basis. Please pray for Alex's mental and emotional strength as well, he is becomming very anxious and scared. He is also in a great deal of pain and they say it can get worse before it gets better.

We are praying and believing for God to heal Alex completely.

Please keep Taylor in your prayers as well he's been incredable through all of this, but he's only 15 and it is tough on him knowing his brother is so sick.

I will be going home tomorrow to take care of a few things and then possibly back up this weekend. Mary's older sister Ellen from New Jersey will be flying in as I'm flying out to assit Mary. At this time it has taken both Mary and I and the nurse to take care of Alex. He requires a great deal of attention. He has been resting a little better, but please pray that he will continue to rest well.

Another note. This unit only takes 16 patients at a time, so you get to know everyone and their issues pretty well. You all become like a family and you pray for each others kids and you rejoice with them when good things happen and you cry with them when things go wrong. Just a few days ago a two year old little boy named Ross died. His parents have taken him home to Texas to lay him to rest. If this is not bad enough, they will be back in a few days , because their older son is here as well facing the same issues. Please pray for the Joiner family as they face an unbearable ordeal. This is the second child that has died since we've been here and it has been very difficult.

Once again thank you for your love and prayers God has truly blessed us through you.

Serving an awesome God

Kell

Monday, March 1, 2004 5:34 AM CST

Hi Everyone,

Quick update. The Drs. now tell us that Alex's Graft vs Host (GVH) looks more like grade 3. They are moving fast with aggressive medication and lots of pain meds. We need to get the GVH under control as quickly as possible. Please pray for the Drs. and nurses as they search for the most effective treatment for Alex. There are so many pieces to this puzzle and it is essential that each medicine/treatment plan is carefully coordinated. THe Drs. seem to be pleased with Alex's status right now. He has some fluid outside the lung that they are watching very closely and he is also being treated for possible pneumonia. His bilirubin is up which means there the GVH is also effecting the liver. It has come down since treatment has started and we are grateful for that. He continues to have alot of diarrhea and we are starting medication to help with that tomorrow. Alex is pretty uncomfortable and anxious. Please continue to pray for peace emotionally, spiritually and physically. He is as always very aware of his treatment plan and checking up on the nurses. He is a pillar of strength and it is obvious to me that God is in our room and will see us through this. I can't say that I understand his plan, but I know he is walking through this nightmare with us.

In Christ,
Mary

Saturday, February 28, 2004 9:48 PM CST

Hi Everyone,

First, the good news. Alex is resting peacefully and appears to be less anxious. Thank you for your prayers. The test results are not yet all in, but the doctors are thinking that we may be dealing with Graft VS Host Disease (GVH) in the bowel and liver. GVH has 4 grades/level with 1 being mild to 4 being severe. At this point, the drs. think Alex's would be grade 2. They have already started him on high dose steroids to treat GVH, because they don't want it to progress while they are waiting for final diagnosis. The complications of the high dose steroids are fevers, high blood sugars and immune supression. We don't need to supress the immune system right now, but we don't have much of a choice. GVH can be very serious and the drs. are being very aggressive with treatment. Please pray that if this is GVH the steroids improve the situation quickly and the immune system is not supressed too much. We still have no cells, but something must be cooking if we have GVH.
The staff of nurses and doctors here are incredible people. They have been very upfront with information, but at the same time continue to offer compassion and encouragement. We have been in tight spots before and this is just another opportunity for God to "Show up and Show Off" We love you all so much and could not do this alone. Thank you for keeping us in your prayers.

Saturday, February 28, 2004 7:21 AM CST

Last night was a very busy night. If your not up to speed on what has been going on in the last couple of days, please look at the past few journals to catch up.
We still have this fluid issue, which seems to have gotten a little better, last night Dr. Morton showed us his cat scan pictures around his lungs and it showed a significant amount of fluid around his right lung. To relieve this he decided to drain the fluid. At about 1:00 this morning the surgeon came in and performed a procedure at Alex's bedside. He was given a local and a tube was inserted between his ribs into the area where the fluid was holding. The procedure went very well and almost a liter of fluid was drained off of his lung. This allowed his lung to expand and for the air to flow much better. I believe this also relieved some of the discomfort he had been experiencing. Even after that Alex had a sleepless night last night. He has not slept in probably three days and this can be a factor contributing to his hallusinating. They also say that it's possible that the drugs they have given him for pain have not been properly processed by the kidneys and so he's having a lingering affect. I also feel that he is having panic attacks all during the day and night. He seems more frightened than he has in the past. Last night he said a couple of times that he didn't want to die. And of course we reassured him that he was going to be okay. This morning he seems to be resting a bit more than last night, but he has alot of sleep to catch up on, so please pray that he would get the rest and comfort that he so desperately needs. If the hallucinating doesn't resolve, they are going to take spinal fluids and look for a virus or infection. Very early this morning Alex wanted his mom to rock him like she did when he was a little bity fella so we brought in a rocking chair and they clung to each other as she rocked him. I began to weep as I observed a very loving moment. A child in his mothers arms with his arms wrapped tightly around her neck and she had him totally wrapped up in her arms as she stroked his head and sang to him. It was truly a beautiful moment. He became very peaceful and the room became very quiet for the first time in awhile. I then got down on my knees and began to pray and ask God why things have been so tough these last few days. I don't have all the answers, but I think that with what happened yesterday, with the doctors expecting to see an intestine in very bad shape and then when they go in and take pictures they are totally suprised to see a somewhat normal intestine. These are not little country town doctors, these folks have the reputation of being among the best in the world and when they tell me they are really suprised at what they saw, That proves to me again that God is involved, at work and in control. Praise God Praise God. Your prayers have been the key to the release of God's power. Please continue to pray for Alex and please pray that the issues I have discussed here will be resolved, he really needs some sleep, and so does Mary.

We love you all, We read daily the messages you post here on this website and continue to be blessed by you words of encouragement.

I will update when I have more to tell you and It may be today, so please read the current and past journals so you will have a good understanding of what is going on. Things move very fast around here.

Serving an awesome God

Kell

Friday, February 27, 2004 4:04 PM CST

Here's an update on the days events. At 3:30 am I woke up to make my 6:15 am flight to Durham. Everything actually ran on time and I got here when expected. As soon as I walked in Alex's room there was no doubt that he was in alot of pain and was just miserable. We were having to keep him from pulling tubes out as he wrestled to find anything that would make him comfortable. He was also rambling and talking out of his head. Prior to my arriving at the hospital Alex had been taken downstairs for a cat scan to look at his brain, his lungs and his gut. As I mentioned before he had a bowel movement that was very bloody, so they needed to find out what was going on. Not ten mionutes after I arrived the doctor walked in and motioned to Mary and I to meet him in the conference room. We were told that the catscan indicated that Alex had inflamation in his intestines and that they were very concerned that the virus had spread. If this was the case, then they would have to begin treating him with a drug that is very toxic and can cause severe kidney problems. The only way to find out was to go in and do a biopsy to see exactly what is going on. We were told that the cat scan showed that the inflamation was causing blockage and that the linings were probably very sinsitive and raw. At this point we were still waiting on the remainder of the results of the cat scan concerning his brain and lungs. Well 30 minutes later, Mary and I were asked to meet two of the doctors in the conference room. When we arrived, we were greeted by two of Alex's doctors, their nurse, the family social worker and the pshycologist. This is always very uncomfortable. We were then told that all the cat scan results were in and that his brain looked fine and his lungs had a little fluid, but they were not real concerned there. we were also told that his liver was a little enlarged but that that was normal for a kid in his condition and no concern there. We were also told that his spleen looked good and that his kidneys looked fine. But they were still concerned about his gut and they wanted to move quickly to do the biopsy. Well 30 minutes later we're headed downstairs again this time for a biopsy. They went in and looked at and photographed his stomach and his colon and intestines. They reomoved some fluid from his stomach and biopsied the tissue in three or four areas. Alex did great while under and when the doctor came out, he said he was very surprised at what he saw. He said he exspected to see inflammed tissue, with bleeding and instead he said everything looked pretty normal. He did see one little area that was a bit swollen, but nothing that he was concerned about. He said Alex's stomach looked fine as well. When I left his room just a couple of minutes ago to come here and post, Mary was feeding him a strawberry flavored Italian Ice. Isn't God awesome? They are still going to try and track where this problem came from, but the doctor said that this morning his thoughts on Alex's condition was that on a scale of 0 to 10 with 0 being good and 10 being the worst, he thougt Alex was at an 8 or a 9, but right now he feels very confident that he is at a 1. We will get the results from the biopsy probably Monday to see for sure what is going on in there, but let it be said that he is better off right now than he was before we called the troops together for prayer. This is such a testamony of the power of prayer. Oh here are a few bonuses. Alex's pulse is down since the biopsy, his blood pressure is down and his lungs are moving alot more air. And oh yeah, he is talking and making sense. Before coming up here, I was adjusting his sheets and looking at his stomach and legs and he asked me, "Dad are you a doctor?" and I said "no" and then he asked, "were you ever a doctor?" and I said "no" and then he asked, "then why are you looking me over so closely?" And I said "oops, sorry. Well this is the latest on Alex and I am glad to be writting this, earlier this morning, things looked very bad and now not nearly as bad. Please keep Alex in your prayers, he still has a ways to go, and we still need to see white cell growth. Thanks for your prayers and concern, each and everyone of you are part of this healing process.

I'll update as soon as I get more info.

Serving an Awesome God,

Kell

Thursday, February 26, 2004 8:46 PM CST

I have booked a flight that leaves at 6:15 Friday morning to Durham. Please pray that I don't run into any delays at the airports so I can get to the hospital as soon as possible.
Alex is having a cat scan tomorrow to help the doctors figure out what's going on. The latest is that he is still having difficulty processing fluids out of his body causeing him a great deal of discomfort and swelling. This has also causeed his blood presure to run high and his pulse to race. Because of the extra fluid that he is carrying, his oxygen saturation is lower than it needs to be so they have him on blow by oxygen. He has blood in his stool and is still dealing with the mucositis which causes discomfort and vomiting. He also has a virus in his gut that is causing him alot of pain so much so that they have had him on morphine. Most recently they have taken him off of the morphine because he has started talking out of his head. Even being off the drug he is still out of it and now they are looking at different possibilities. The cat scan tomorrow will be looking at his head, lungs and abdomine. They are leaning in the direction that they think the virus may have spread and may be the reason for the blood in the stool. there's enough blood in the stool that the stool is red. Alex was also running low on platelets which they are presently replentishing and this could also be an explanation for the blood. Back to the virus, this is a virus that is tough to treat and the treatment itself can be very rough on the kidneys. Alex needs to be covered in prayers from head to toe. I have done my best to give you an idea of what needs to be prayed for.

As you can imagine it is very difficult to watch your child go through this. We seek God's healing touch and comfort for Alex.. Please be in prayer for us all and pass this information on to as many others as possible. I will update as soon as I can.

In Christ

Kell

Wednesday, February 25, 2004 8:23 PM CST

Well Taylor and I just got back early this morning from spending a long weekend with Mary and Alex. It was wonderful being there with them, but at the same time it was upsetting watching Alex go through this process. His face and stomach are very swollen right now due to the fact that his body is having a hard time getting rid of fluids. The way I understand it is this. His cells are leaking fluid right now due to the lack of a particular protein, when this happens the sensors in his boby tell his brain that he is dehydrating so he becomes very thirsty, but because the fluid has leaked out of the cells, it doesn't get processed out of the body like it's supposed to. This causes the bloating. Yesterday they did an ultrasound to check his liver for a disease they refer to as VOD. This is a liver disease that causes blood clots in the small vessels of the liver thus preventing the proper flow of blood and it sets off a chain reaction of problems. Praise God the test came back negativ yesterday and they say the liver looks good, but continue to monitor the liver very closely. They have begun giving Alex a protein that is supposed to help the cells absorb the fluid and then they give him another drug to help the body process the fluid so he can urinate and get this fluid out. This has him very uncomfortable. Please pray this fluid retention issue is resolved very quickly. Alex is still dealing with the mucositis which causes nausia and vomiting. He also is dealing with a virus that is causing diahrea. We are also still waiting to see a the white cell count make a grand entrance. They have also spotted some fluid around his lungs but are pretty sure it's just the fluid that his body is holding.

With all of this going on neither he nor Mary are getting much sleep at night. When Taylor and I went up I rented a hotel room next to the hospital and I was able to get Mary and Taylor to stay there while I stayed with Alex at night.

Alex doesn't feel like talking, or eating or even watching TV, so I know he doesn't feel well. One day when it was just he and I, I asked him what he wanted to do most right now, and he said, "I just want to go outside and play."

Please keep Alex in your prayers and pray specifically for the fluid issue, the mucositis, the diahrea and of course the white blood cells.

Also please lift Mary up that she would recieve strength and peace.

Kell

Friday, February 20, 2004 9:54 PM CST

"Blessed are those who trust in the Lord...
They are like trees planted along a riverband, with roots
that reach deep into the water. Such trees are not bothered by the heat or worried by long months of drought.
Their leaves stay green, and they go right on producing delicious fruit."
Jeremiah 17:7-8

This is the verse that I have been clinging to the last couple of days. We are definitely experiencing a drought and I am holding on to my roots and clinging to the hope that is found in God alone. Alex continues to be in pain. The docors and nurses are working hard to find the right combination of medicines to make him comfortable. I believe they may have hit on something this evening as he is resting comfortably now. Please keep the nurses and doctors here at Duke in your prayers. They are truly committed to these children and we are very grateful for their knowledge and desire to heal our child.
The doctors tell us that everything Alex is experiencing is to be expected and they continue to be pleased with his progress. Although this brings me some comfort, it is still difficult to see him struggle. He's such a tough little guy and he inspires me daily. Our white cell count remains at 0, although the rash on his palms and feet could be indicative of engraftment. Grow Cells Grow!!!!!
I am expecting Kell and Taylor any minute and can't wait to spend time together as a family. Hopefully, Alex will begin to feel better soon. As always we are grateful for your prayers.

Love,
Mary

Wednesday, February 18, 2004 7:20 AM CST

Hi Everyone,

Day 21 and counting. No cell growth yet. Keep dancing. Alex has been having a rough couple of days. He continues to experience pain and vomiting from the mucositis and he also tested positive for adenovirus which explains the severe diarrhea. Adenovirus is pretty common from what they tell me, but of course can be very serious for bone marrow transplant patients. They put him on contact isolation which means that everytime we leave the room we have to put on a lovely yellow gown and gloves. I keep telling them that yellow is not my color, but they don't seem to care.
It is difficult to see Alex so uncomfortable. He had such a great stretch of feeling well. Please pray that the virus resolves quickly and he gets some relief from the mucositis. Talked to Kell this morning. He's having a rough time being away. We are all looking forward to being together this weekend.
Thanks again for all the prayers. We love you all very much.

Love,
Mary

Wednesday, February 18, 2004 5:12 AM CST

Good Morning,

Alex has been having a rough couple of days. He continues to experience pain and vomiting from the mucositis and has also tested positive for adenovirus which explains the sever diarrhea. Adenovirus is a very common virus from what they tell me, but of course can be very serious with bone marrow transplant patients. They medicine they are giving him is a nasty tasting liquid taken orally and he is having trouble keeping it down. Please pray that this resolves itself and the medicine quickly takes care of the virus. It is difficult to see him so uncomfortable.
Grow cells grow.

Love,
Mary

Monday, February 16, 2004 4:08 PM CST

Gosh it was so nice to see many of you at church yesterday, I wish I had been able to visit with everyone.
Yesterday, our Pastor, Dennis Eenigenburg, delivered a wonderful message on how our faith must be tested in order for it to be perfected. I had a deep understanding and appreciation for his message not because I had heard it before or read about it in the past, but because both Mary and I as well as Alex and Taylor are living that message out in our lives at this very moment. Our faith has been tested and will continue to be tested I'm sure, but with each test God makes a way for victory and rewards us with wisdom and strength that only He can provide. I once heard someone say that "Faith is simply believing that God is telling the truth."

Although our faith is growing daily, it's still hard to watch Alex go through the sickness that comes with this process of healing, but I do believe God is in control and that when Alex has this all behind him, he will be a walking testimony of God's Love.

Alex is having a little trouble with vomiting caused by mucositis , which is predictable for anyone that has been through chemo. He is also having trouble with diahrea that they are watching closely. The mucositis causes extreme tenderness in the mouth throat and the esophagus that makes it difficult to swallow and very uncomfortable. It also produces mucous that causes the vomiting. Needless to say he is not feeling well at this time. Please continue to pray for his healing as well as relief from the mucositis and all that comes along with it.

Please pray for Mary's physical, emotional and spiritual strength at this time. Being in the bone marrow transplant unit with Alex, she is exposed to an aweful lot. In the last week a little girl a few doors down passed away and another little girl on the other side of the hall is not doing very well either. Mary is doing her best to reach out to those parents, but she is having a difficult time. On top of that she is worried with Alex and his condition.

We continue to be encouraged by the Word and by all of the support we continue to recieve. You'll never know how much we appreciate each and everyone of you.

In Christ

Kell Johnson

Saturday, February 14, 2004 9:44 AM CST

Happy Valentine Day,

We are on day 17 and Alex is plugging along. He is experiencing some discomfort from the mucositis, but we're working through it. We had a sing along last night with some of the other families. I, of course, had a wonderful time. Alex was very tolerant. He did request "Let It Be" and "Sweet Home Alabama". Lot of nice people up here looking for ways to pass the time.
Miss you all bunches.
Love,
Mary

Wednesday, February 11, 2004 3:34 PM CST

"Blessed are those who trust in the Lord...
They are like trees planted along a riverbank, with
roots that reach deep into the water. Such trees
are not bothered by the heat or worried by long
months of drought. Their leaves stay green, and they go right on producing delicious fruit."
Jeremiah 17:7-8

Day 14 and counting. No cells yet, but that is to be expected. The doctors continue to be pleased. Alex is getting a little restless and misses Flash, Dad, Taylor and his friends very much. He keeps fairly busy with school, visits with other kids on the floor and his best buddy and hanging out with the nurses. His primary nurse, Jennifer gave him a very cool remote control car. She may live to regret it. He is constantly out in the hall practicing his driving skills.
Taylor is wrestling in the state tournament in New Orleans this weekend. Kell will be very busy running him back and forth and spending many hours waiting in the bleachers. I can't believe I'm actually a little jealous. They will come up for the 4 day Mardi Gras Holiday and we can't wait.
We had a nice visit from an associate pastor from our church, Jeff Mitchell and his brother. It is so good to see familiar people and catch up on the outside world.
I will try to get some new pictures on the site in the next couple of days.

Love,
Mary

Sunday, February 8, 2004 5:44 PM CST

Hi Everyone,

Kell, Alex and I are having a great time hanging out. The hospital has a program where they hook the kids up with a university student known as their "best buddy". Alex's best buddy is Whitney. She is great and Alex and her hit it off immediately. She came and sat with Alex while Kell and I had a date night. It was wonderful. Alex continues to do well. His main complaint is that he is hungry and nothing tastes just right. The doctors say this is typical and it will pass. They say it is good that Alex is hungry and is even interested in food. We are going to kick back and watch the probowl tonight. Kell flies out in the morning. We had a great visit with my cousin Jack and his wife Marg this afternoon. They were our first visitors.
Please continue to keep us in your prayers and keep dancing!
Love,
Mary

Friday, February 6, 2004 10:17 AM CST

"From Him the whole body, joined and held together by every supporting ligament grows and builds itself up in love, as each part does its work" Ephesians 4:16

"So then, just as you received Christ Jesus as Lord, continue to live in him, rooted and built up in Him, strengthened in the faith as you were taught and overflowing with thankfulness" Colossians 2:6-7

GROW CELLS GROW!!!!!!!!!!!!!!!

Sorry it has taken so long to update, but we have been busy doing the Stem Cell Boogie up and down the halls. No cells yet, but we are still very early in the game. Alex has been experiencing a little discomfort, but has been a real trooper. The nurses and doctors are so compassionate and do all they can to keep the kids comfortable. Alex has a pain pump which he is becoming very attached to. It keeps him very comfortable and happy!! Kell is coming in tonight and we can't wait. Taylor is spending the weekend at a friends house. Thank you Kirsten and Michael. Alex misses Flash very much, but Taylor and Kell took some very entertaining video of her last night from what I've been told. Something about outfits and props-should be interesting.

Thanks again for all the entries. Alex loves to log on and see who has written. Andy, he of course loved your joke and sports tips. He talks about you guys all the time. Thanks again for all your love and caring. He loves to get mail also. Thanks for sending it-keep it coming. There is a beautiful quilt hanging in the hall here that says " God has no hands but ours" THank you for being God's hands. We love you all.
Mary

Tuesday, February 3, 2004 1:43 PM CST

Hi Everyone,

Day 6 and counting! Alex is feeling great today. He ate 3 ears of corn on the cob and is up roaming the halls again. He made Valentine Days Cards with his friends and is looking forward to watching American Idol! I confess, we're hooked. Have to go one of the children is going home today. We have to throw confetti!

Monday, February 2, 2004 9:41 AM CST

Good Morning Everyone,

Alex and I are just getting rolling this morning as we were up late celebrating the Patriots victory!!! Go Mr. Brian. We were not too popular since we're residing in Panther country. Alex continues to feel pretty good. His mouth is tender which they say is the beginning of the mucousitis. So far Alex's is mild. He ate fried chicken and pasta last night so it's not slowing him down too much. He has such a positive attitude and I am inspired by him every day.
Kell is hoping to come up this weekend. Alex and I miss him and Taylor, but all in all we are doing well.

Friday, January 30, 2004 12:11 AM CST

Hi Everyone,

Alex and I are having a great time visualizing all of you doing the stem cell boogie! Don't hurt yourselves. Alex continues be in great spirits and is playing basketball and flirting with all the nurses. They have some real cuties here. He's with his teacher right now and I think actually enjoying it. Thank you to all his wonderful teachers a DTP for organizing lessons to jump start the hospital/homebound teacher. She was very impressed-of course. I told her "they don't come any better".
God has been so faithful and the days go by quickly. We miss everyone so much, but meet new friends every day.

Love,
Mary

Wednesday, January 28, 2004 3:56 PM CST

Hi Everyone,

Today was our big day! The transplant can seem so anticlimatic, Alex just sat in his bed while the stem cells were infused through his central line. He was very laid back as usual while I sat there crying. He just kept looking at me rolling his eyes. It's tough having such an emotional Mom. I was just overwelmed with gratitude for the mom and dad who donated their child's cord blood stem cells so mine could be healed. I am also so thankful for the wonderful doctors and nurses at Duke.
As for now we just wait and pray for the stem cells to grow. The child life specialist tells me it also helps to do a stem cell dance. So I expect all of you to boogy on down as you pray for Alex! Click on the photo album for some cute pictures. Thanks again for keeping us in your thoughts and prayers. We love you.

In Christ,
Mary

Tuesday, January 27, 2004 12:11 AM CST

Taylor and I finally made it home after quite an adventure in air travel, or should I say an adventure in sitting on our fannies in an airport all day and half the night trying to get comfortable awaiting air travel. More on that later, but first an update on Alex.

As you know, this past weekend started on Saturday with Alex recieving his first treatment of chemo and he did amazingly well, as a matter of fact he and I shot hoops in the hallway for about an hour after his treatment. Isn't God good? On Sunday once again the chemo was going so well, that Alex decided that he didn't have the patience to wait for it to end, so we shot baskets while the chemo was being administered. I would have forgotten that he was getting treatment except for the fact that I had to continue to make sure he had enough slack in his lines coming from the chemo drip while practicing his lay-ups. We even lowered the goal so he could practice dunking the ball. This went on for an hour and a half and the only reason we stopped then was because the hallway was getting a little crowded.

Later that day Alex would recieve his first treatment of ATG which is a very strong drug that has plenty of scarry side effects including high fevers, vomiting, and the possibility of causing harm to certain organs. Well the fever, vomiting and diarhea came as scheduled along with hives and a rash, but it seemed to be controlled with medications and constant care and Alex made it through the first night on ATG with lower than expected fevers and the morning came bringing him a well deserved rest as he slept most of the morning. It also brought his last chemo treatment and another round of basketball.

Last night he recieved his second treatment of ATG which wasn't as bad as the first night, he still had a little fever and diarhea and only vomited once. It was a much better night. The doctor even told Alex that he had never had a patient go through the ATG treatment with fever as low as Alex has had. The power of Prayer is awesome. This afternoon Alex will undergo his last treatment of ATG and then tomorrow comes the transplant.

I want to encourage you to continue to pray for Alex as he continues to go through this healing process. It's easy to come to the conclusion that Alex is doing well and perhaps he isn't in need of prayer as much as before, but Mary and I know that Alex is doing so well because of the continuous prayers of so many and we ask that you please continue to pray for our little boy. None of us could have made it this far without your prayers and the Gracious Touch of Our Heavenly Father.

We are all witness to God's Word in action and I know in my heart the following scripture is being played out in our lives for all to see.

"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 1:9-11

At sometime in our lives we have all wondered if prayers are really answered, I know I have and I've even wondered at times if God really heard my prayers. At times in my life I've found myself in a place where I felt far away from God and even questioned his existance, after all how could a loving God allow me to fall so far. But even in those deepest darkest moments at some point I found myself looking up to God and praying in desperation and at that very moment, a spark of hope began to chase away the darkness and my way home became visible as my prayers reached the Fathers ears.

So many of you have prayed and I ask that you continue to pray, but what I really want you to know is that your prayers have reached the Fathers ears and he has heard you and he has answered your prayers and continues to answer your prayers.

Stop for a moment and think about the miracle of that. Your prayers and my prayers have reached the ears of God and have touched His heart and he has acted upon those prayers. I hope this will inspire all of us to pray more and to pray with the knowledge that God hears our prayers and answers our prayers.

As you can imagine, through all of this we have had our share of highs and lows and our emotions have been all over the map. During the lows I spend much of my time in prayer even to the point that I feel like I'm all prayed out, and sometimes in those moments I just continue to pray and somehow I find the words to continue. Sometimes, I stop praying because I can't find the words and I think that this may be God's way of telling me to be quiet and listen. It's not easy to listen, but I am learning. I am even learning to meditate at these times, by lying there in a quiet room and imagining myself sitting with Jesus, just he and I, many times no words spoken, but just experiencing everything about being with him and feeling his love for me. It is then that I truly feel, all is well.

During the highs, I feel I can breath like a normal person and that my prayers are being answered. But I also find that this is a time that I tend to step out a little more on my own without God, after all things are going well and life seems to be moving forward with fewer bumps in the road. Right? Wrong. The bumps always return and when I'm out there on the fringes kinda doing my own thing living my own life, I panic and come running back with my tail tucked between my legs. Sometimes, I'm dumb enough to hang out there on the fringes too long thinking I can handle it and really get myself into a mess. I wish I could say I don't do that anymore, but I do, but the amount of time that I hang out there doing my own thing seems to be growing shorter and shorter with each passing day and each passing experience meaning that the time I spend in fellowship with the Father is growing and that is my ultimate goal, more time with the Father.

There's one last thing I want to leave you with, it's something I read and it really pertains my life and what I've shared with you today,I'm sure it pertains to all of you too. It's written by C.S. Lewis and it's called:

"He Stoops to Conquer"

God who has made us, knows what we are and that our happiness lies in him. Yet we will not seek it in him as long as he leaves us any other resort where it can even plausibly be looked for. While what we call "our own life" remains agreeable we will not surrender it to him...We are perplexed to see misfortune falling upon decent, inoffensive, worthy people, on capable hard-working mothers of families or diligent, thrifty little tradespeople, on those who have worked so hard, and so honestly, for their modest stock of happiness and now seem to be entering on the enjoyment of it with the fullest right...
Let me implore the reader to try to believe, if only for the moment, that God, who made these deserving people, may really be right when he thinks that their modest prosperity and the happiness of their children are not enough to make them blessed; that all this must fall from them in the end, and that if they have not learned to know him that they will be wretched. And therefore he troubles them, warning them in advance on an insufficiency that one day they will have to discover...I call this a Divine humility because it is a poor thing to strike our colors to God when the ship is going down under us; a poor thing to come to him as a last resort, to offer up "our own" when it is no longer worth keeping. If God were proud he would hardly have us on such terms; but he is not proud, he stoops to conquer, he will have us even though we have shown that we prefer everything else to him, and come to him because there is "nothing better" now to be had.

In Christ

Kell Johnson

Sunday, January 25, 2004 3:51 PM CST

Well, Taylor and I were scheduled to fly home this afternoon, but our flight was cancelled due to all of the snow we're getting up here. That means Mary and Alex are stuck with us for one more night. Alex has been doing great, he and I shot baskets for about an hour after his chemo today. He just started a new treatment that they say can cause several side effects including high fever. They also say the kids that get sick usually get sick between 8:00p.m. and 5:00 a.m. What's that all about? Well your prayers have gotten us through this far so I am just trustung that God will continue to see Alex through this process with the best of results and with little to no complications. Before I sign off I just want to let those of you that have been following Mary's journals know that she does actually know how to spell Taylor's name, she blames it on a brain hick-up, I have a different name for it, but I'll just leave it at that. We will continue to update you so you can continue to pray specifically for Alex's needs.

Thanks for all of your love, prayers and generousity.

Kell Johnson
Mary's husband and
Taylor and alex's dad

Sunday, January 25, 2004 10:14 AM CST

Hi Everyone,

It's snowing! Alex has mixed feelings. He's excited to see it, but not too happy to be stuck in a room. He continues to feel well and is eating. We start the ATG drug today at 3:00. We are told the children usually have some reaction to it. We are praying for no to mild side effects.
Alex has met a new friend, Jacob. Very sweet little boy-lots of personality. They were up to 10:30 shooting baskets in the hall. Unfortunately, Tayor was not been able to come up to the unit because he has a sore throat. We are all disappointed, but trying to make the best of it. Yesterday, Tayor and I went out to lunch and to Best Buy. We were also able to stop by the Guidry's for a short visit. Guy was in the back yard cleaning ducks. You can take the boy out of Louisiana, but you can't take the Louisiana out of the boy! It was so nice to spend time alone with Taylor. I miss him terribly and I am so proud of him.
Kell and Taylor are scheduled to fly home today at 4:45 weather permitting. Our new friends Melanie and Ron Stein have offered to drive them to the airport. We are so thankful for everyone's kindness.

Love,
Mary

Friday, January 23, 2004 5:57 PM CST

Hi Everyone,

Kell and Taylor arrived safely Thurs. evening. Alex has been admitted into the unit and is currently munching on chicken strips. He has lost a little weight, but is eating pretty well. We will begin 3 days of chemo and 4 days of ATG tomorrow with the transplant scheduled for Weds.
The address here is Duke Medical Center
Bone Marrow Transplant Unit
Durham, N.C.
Rm. 5208
The phone number is 919-681-5208

Miss everyone so much. Thanks for keeping in touch.

Love,
Mary

Friday, January 23, 2004 5:57 PM CST

Tuesday, January 20, 2004 4:38 PM CST

Hi Everyone,

It's Tuesday evening and Alex has finished his first day of radiation. He experienced a little nausea, but is feeling fine now. We had a very busy weekend. We have already met 3 families who have reached out to us-taking us to movies, dinner and just hanging out. Thanks to everyone for hooking us up with such nice people. We also have met a very nice pharmacist who has taken us under his wing. He is helping us negotiate with our insurance company to get medications approved in a timely manner-not an easy job!
Thanks again for all your concern and prayers.

Love,
Mary

Saturday, January 17, 2004 8:18 AM CST

Hi Everyone,

It's a beautiful Saturday morning in Durham. We are having a lazy morning. We have lunch plans with a family friend who now lives in Durham. The Guidry's have been friends of my family since we were first relocated from New Jersey in 1972. Guy Guidry and his wife now live in Durham. They also attended the Chapel several years ago. Guy and his wife Betty Ann found out about our situation and did not hesitate to call and offer to help us. The body of Christ at work again!

The meeting with our ongologist, Dr. Prasad went very well yesterday. He is a very nice man and is quickly developing a rapport with Alex. Those of you who now Alex well know that he is slow to warm up and a man of few words. It has been amazing to watch how this situation has made him so much more outgoing. Dr. Prasad reiterated that Alex is in good shape for the transplant. All tests game back with good results. Of course there are many risks and complications and we went over every one of them. Kell and I decided to list them on the journal page so you all will know how to pray specifically. Please be in prayer for the following:
-Infections: bacterial, viral, fungal and protozoan
-Bleeding: he will require many transfusions
-Graft-vs-Host Disease:the patients new stem cells recognize their body as foreign and react against it.
-Interstitial Pneumonitis: lung disease
-Veno-Occlusive Disease: complication which involves the liver
-Renal Failure
-Failure to Engraft: sometimes transplant stem cells fail to engraft or grow.
-Potential Relapse: disease may occur at any time after transplant.
Alex will be on many medications to prevent these complications and we are expecting him to do well. We just want him covered in prayer. As always we are filled with gratitude for all your prayers.

In Christ,
Mary

Thursday, January 15, 2004 4:51 PM CST

Hi Everyone,

It's 6:00p.m. and Alex and I are relaxing in the hotel room. The surgery lasted longer than thought because the surgeon had some trouble putting the line in on the right side and had to stop and start again on the left side. The line went in easily on the left side, but Alex was pretty sore when he woke up. He wasn't too happy and told me he wanted to go back to Ochsners where they know what they are doing!!! Dr. Adolf, Alex thinks you are great. The surgeons here have a hard act to follow.
Tomorrow we have some pre-radiation labs drawn and an ekg. We then meet with Dr. Prasad and sign consent forms. We are off for the long weekend and start our radiation on Tues. Alex should be feeling better by tomorrow and I'm sure will keep me busy. Will write tomorrow.

Love,
Mary

Wednesday, January 14, 2004 6:18 PM CST

Hi Everyone,

Another successful day running around Duke and the Durham area. We met our radiologist today Dr. Halperin. Very nice and intelligent man. We also met a fellow Tiger fan-Will. He's a nurse in the radiology dept. and Alex and he bonded immediately. Our other nurse was a Florida Gator fan, but we accepted her in spite of her faults!! So many nice and helpful people. The weather has been beautiful- cool and clear. Alex continues to watch the weather in hopes of snow.
Tomorrow we are scheduled for his new central line to be placed at 12:45. He's not too happy about the time since he will not be able to eat all day until after surgery. He eats constantly and now ways more than he ever has.
Kell had planned to come up this weekend, but is going to wait until next weekend as we will be moving into the hospital next Friday. We are hoping to bring Taylor up also. Special thanks to my brother and sister in law, Christ and Rachel Brokmeier and Matt and Julie Heinz for
helping us parent Taylor when we can not be there. As I meet more and more families, I realize how blessed we are to have such a great family, church family and friends. We love ya, love ya, love ya.
Will write tomorrow. Alex wants to play Gin Rummy.

In Christ,
Mary

Tuesday, January 13, 2004 4:57 PM CST

Bless the Lord ,O my soul, And forget not all His benefits:
Who forgives all your iniquities, Who heals all your diseases...Ps 103:2-4

This is the verse that God gave me at the very beginning of Alex's healing process. Today as Alex and I ran from one specialist to the next getting one test or another. I began to feel very anxious. I pulled out a prayer card that my friend, Linda Guedry had given me and one of the verses on it was Ps. 103:2-4. I was reminded of God's faithfulness through the past 3 months and was comforted.

Alex is having the time of his life. He is looking at this whole thing as a great big adventure. We went bowling last night and also play a rousing game of air hockey. He is meeting alot of new people and is very impressed with the facilities at Duke.

Alex will be going through 4 days of radiation and 2 days of strong chemo. Please be in prayer for his organs, specifically his heart as the chemo he will be recieving 3 days pretransplant can cause severe heart damage. This is not expected, but they have seen it. They tell us he will experience pain, but have many drugs to make him feel comfortable. As I said, he is in great spirits and keeps reminding me that this is what we need to do to make him feel better. He has amazing strength and courage that I draw from daily. Tomorrow we meet with the radiologist and ophtamologist. He will also have ct scans of his brain, sinuses, chest, abdomen and pelvis. Thursday he will go to surgery for a permanent central line to be placed.

Thanks again for all your love and concern.
Love,
Mary

Saturday, January 10, 2004 8:42 PM CST

Hello Everyone,

Sorry we haven't written in a while. We had a wonderful week at home catching up on sleep and family time. Alex continues to feel great and has been fever free for over a month. God is Good! To all our friends at Ochsner- We miss you, miss you, miss you. Kell and the boys were laughing at me when we were discharged because I was crying all the way to the car. You all have become part of our family and we will never forget all your love and care.

We had a wonderful flight to Durham. Thank you Kevin Reilly and John Miller of Lamar Advertising. Our pilots, Mr. Derrick and Mr. Stuart could not have been kinder. We have some very cool pictures of Alex coming soon!! As always we are overwelmed with the generousity of others. God continues to show up and show off through the acts of love displayed by the body of Christ.

We will be staying in a hotel close to Duke Medical Center during the next 2 weeks. Alex will be going through a series of tests as an outpatient. He will recieve 4 days of radiation beginning on the 20th and be admitted to the .hospital on the 23rd. He will then recieve more chemo and the bone marrow transplant will follow. I'm not sure about the exact date, but will keep you posted.

Kell will be flying back home Monday night to be with Taylor. Please be in prayer that Alex and I find our way around Durham. Those of you who know me and my sense of direction know that this is a serious prayer need.

Well have to go, Alex wants me to watch the New England Patriots play the Tennessee Titans. We are looking for Mr. Brian Kinchen-fellow Chapel member. Go Patriots!!!!

In Christ,
Mary

Monday, January 5, 2004 9:11 PM CST

Life could not be "sweeter" for the Johnson family right now. In addition to Alex and Kell being able to be present in the Superdome to watch LSU win the National Championship last night, this evening they received the news that Alex is in REMISSION!! Praise God!

Alex had a great time at the game last night. Kell said he was all smiles and got some great pictures of him. When Kell and Alex got in at 1:30am Mary asked him how it was and he said "It was exhausting!" After a late night, he was put back in the car this morning (still sleeping) and drove back to N.O. for his bone aspiration today. It was an outpatient procedure and Mary said Alex was talking to everyone in the waiting room about last night's game and describing it play by play! They received the news around 5:30p.m. that Alex was clear of leukemia. The doctors are very pleased and say that he is in good shape for a bone marrow transplant.

Plans are still for Mary and Alex to fly out this Saturday for Duke University Medical Center. He has an appointment Monday morning, January 12. The evaluation will take about two weeks and then the doctors will give them a plan of action.

Tonight the family was going to relax and watch a movie together. Mary and Kell will write soon, but need to catch up on some sleep first!

Susan Mayeaux
(For The Johnson Family)

Saturday, January 3, 2004 3:11 PM CST

GIVE THANKS TO THE LORD FOR HE IS GOOD. Psalm 136:1

It is with great joy in my heart that I get to tell you just how well Alex is doing. He and Mary went to the Ochsner Clinic yesterday (Friday) for blood work - Alex's platlet count was 112,000 (normal is between 150,000 and 300,000); his white blood cell count was 990 (over 1,000 and he will be out of the neutropenic state); and no blasts found! Mary said his numbers are more than doubling each day. He looks wonderful and Mary said he is back to his old self. Mary related a sweet story yesterday - she was laying down resting and hears Alex's voice from the hallway, "Mom, can I go outside and play?" What beautiful words for a mother to hear! The doctor said since Alex's platlet count is up he can ride his bike, toss the football,etc.

The real big news is that Alex has been cleared to attend THE SUGAR BOWL!! Alex and Kell received tickets to the game along with a VIP Parking Pass! (Many thanks to those sweet souls!) Be sure to look for Alex on TV. He asked Mary if he could make a sign and they are going to decorate his face mask Purple and Gold! Although Mary is excited for Alex, she still says Pray! Pray! Pray!

On Monday Alex will have his bone aspiration at Ochsner to see if he is in remission. If he is, he and Mary will be flying out Saturday, January 10 to Duke University Medical Center. Kell will leave the day before by car to get accomodations set up and meet Mary and Alex at the airport. After meeting with the doctors and getting Mary and Alex settled, Kell will fly home leaving Mary with the car.

The new car I should say - that is another answered prayer! They found a Ford Explorer and purchased it yesterday evening. So Mary is set! Mary is very excited about being home and having the week to prepare for Duke. She is even more excited about just doing "the mom thing" -waking kids up, fixing breakfast, bringing Taylor to school, fixing dinner, homework, etc. Although I know it will feel great to her to be back into a normal routine, pray that she does not overdue it. I think she is just realizing how tired she really is.

If you have not already looked, there are new pictures in the picture journal and new prayer requests in the prayer journal. Thank you again for your concern for Kell, Mary Taylor and Alex.

Susan Mayeaux
(For the Johnson Family)

Tuesday, December 30, 2003 4:31 PM CST

Well, it's a red letter day for the Johnson household - Mary and Alex are home and Taylor got his braces off today!
Alex was discharged from the hospital Monday evening and will be home until he goes to Duke University Medical Center in North Carolina. Alex looks great and was full of smiles when I saw him Sunday. He and Kell had tossed the football and flown is new remote control helicopter. His total white blood cell count is slowing increasing. He is scheduled for another bone aspiration on Monday (Jan 5 at Ochsner) to see if he is in remission. If he is in remission he will report to Duke Jan 7; if he is not in remission, he will begin a new chemo procedure. When he goes to Duke he will begin a two week evaluation process to prepare for a bone marrow transplant. Mary and Alex will stay in an apartment during the evaluation process and for the two months following the transplant. They are looking at being in North Carolina for about 3 months. Please be in prayer that Alex's time at home this week is restful and uneventful. Pray for Mary and Kell as they have so much information to absorb and decisions to make before next week. Pray that during all this they are also able to find a car before Mary leaves so that she can have wheels in NC. (Small SUV, used, 4-Door)

Please check site later for Christmas pictures and additional prayer requests.

Thank you for your prayers and concern for Alex and the entire Johnson family.

Susan Mayeaux
(For The Johnson Family)

Saturday, December 27, 2003 11:27 AM CST

I just spoke with Mary and she and Alex are doing well. Alex's total white blood count is slowly creeping up and he is holding his own on platelets. Mary said the doctors are pleased with Alex's pattern of recovery. If his progress continues they are hoping to be home by New Year's. As Mary told you in the last journal entry, they have an appointment at Duke in North Carolina January 7. She is hoping for a little time at home before leaving again.

PRAYER REQUEST/NEED: Mary and Kell have been planning on replacing Mary's car for some time. Due to Alex's illness they have not had time to look. Now that Mary will be needing a dependable set of wheels in North Carolina it is imperative that they find one ASAP. Kell is out looking today. Please be in prayer that he finds what they need at a good price. They are looking for a small, used SUV between $10k - $15k. If you know of one for sale, or run across one in the paper, please let Kell or Mary know.

As always, thank you for your concern and prayers for Alex and the Johnson family.

Susan Mayeaux

Thursday, December 25, 2003 10:15 AM CST

Merry Christmas Everyone,

We had a wonderful time in the atrium last night. My niece, Catherine and her boyfriend Alan led us in song. Kell sang O Holy Night and I sang Santa Baby!! Alex was all smiles underneath his mask. We made some wonderful memories and are truly thankful to all the doctors, nurses, social workers and other staff who worked so hard to make our day special. We ordered our Christmas dinner from a local grocery store. When it arrived the turkey did not look too appetizing. The pharmacist, Leanne quickly grabbed it and said, "I'm taking this bird home to fix him." This morning there was a beautifully cooked turkey along with some extra goodies. Thank you Leanne. We are waiting for Alex's IV antibiotic to finish and then we're off to the hotel for dinner and ball games.

Please be in prayer for continued protection from infection. God has been so faithful. Alex has been fever free since Dec. 5th. I received a call from the bone marrow transplant coordinator at Duke Tues. I was blown away when she informed me that Alex has a tentative appoinment at Duke for Jan. 7th. We knew we were headed there but now that it is right here, I'm a little anxious. We have gotten so close to the staff at Ochsner I can't imagine leaving them. I know this is the right decision and God will meet us at Duke. If Alex is in remission and they have found a match, we will stay and proceed with the transplant. We will be at Duke for a month and then find lodging around the hospital and be monitored closely for 2 months. If he is in remission and they have not yet found a match, we will come back and be put on maintenance chemo until a match is found. We have not asked what happens if he is not in remission. I guess we will cross that bridge if we have to. Alex looks so good. I just feel that we are going to get good news.
Well I have to go. Alex is unhooked and ready to fly his Air Hogs remote control helicopter.
We love you all very much.

Merry Christmas,
The Johnsons

Tuesday, December 23, 2003 4:43 PM CST

Hi Everyone,

This Christmas Season finds us truly thankful for all our friends and family. Words can never express our gratitude for all you have done to help us through this healing process. Flash came to see Alex Monday and was a big hit. She was only supposed to stay for 2 hours, but stayed for 4. Thanks Jan and Kay for bringing her up. We got to take Flash outside for a walk and even took a stroll on the levee! I'm not sure if we broke hospital policy, but it sure felt great! We have some great pictures that we will try to post shortly. Have to go Alex wants to play poker!

Thursday, December 18, 2003 9:31 PM CST

Hi Everyone,

We continue to be very busy running after Alex. He wakes up in the morning and says, "Hi Mom, What are we going to do today?" Although he looks great and has lots of energy, his total white blood cell count (ANC) continues to be 0. THis limits where we can go and what we can do. God continues to show up and show off through the love of others. The mail lady, Mary, has become a personal friend as she brings us mail daily. Thank you, thank you ,thank you from the bottom of a mother's heart for keeping Alex in your thoughts and prayer. His 8 foot paper Christmas tree is covered with some very creative ornaments. The nurses come in daily to see the additions. Thanks Susan for your great idea.
Flash has been approved to visit Alex in the hospital!!!! This should be very interesting. One of the questions on the survey is, Has your dog ever been on an elevator? Alex thought that was hysterical and wants his Dad to call him on the cell phone when he gets to the hospital so he can ride the elevator with Flash. Keep posted for updates!!!!!
Many of you already know that there is a good chance we will be in the hospital for Christmas. Although we are praying that Alex's counts come up so we can be home, we are at peace with being here. One thing we have learned through this healing process is that God will meet you right where you are. We are so thankful that Alex seems to be responding to the chemo and is feeling so well.
Please pray for Kell. He has come down with some kind of virus. Thanks for your prayers for Taylor. He is such a great kid and we are very proud of him. Well, I have to go now. Alex wants to play air hockey.

Love ya, Love ya, Love ya and Miss ya, Miss ya, Miss ya
Mary

Monday, December 15, 2003 5:12 PM CST

It has been way too long since I last posted here on the journal. Since Thanksgiving we have been on a roller coaster ride hitting both lows and highs. My emotions have been run through the mill and I have found it hard to express myself in any sensable manner. At this moment Alex is doing very well. The Doctors have even said that they were very pleased with what was going on with him. His bone marrow has been zapped (sorry for using such scientific terminology) and his blood cell count is zero, but this is what the doctors were hopin for. Alex hasn't had a fever since Dec. 5th and we are praying that God will keep him safe from any and all infections. It is wonderful to see him feeling so good and to see his appetite making a comeback. The nurses told Mary and I that Alex is the talk of the pediatric ward and everyone is amazed at how well he is doing. We still need your prayers as much now as ever before, because we still have a long ways to go, but we are confident that God is healing Alex as we speak. Yesterday while I was with Alex a lady from down the hall who's 21 year old son is being treated for cancer came to talk with Mary, but Mary was out. They were given the same news this past weekend that we recieved about Alex the day after Thanksgiving and that is that the chemo they were trying wasn't working. Now they are faced with trying something new in hopes that the new chemo will work. She stayed and we spoke for about an hour and I was able to share with her some of the feelings we had and how we were able to face the next day. I shared with her some of the intimate conversations I had with God and she seemed to be comforted. It's funny, one of my prayers was that as a result of what we are going through with Alex, that God would use us to minister to others that are facing this horrible ordeal. I have to admit, I thought God was going to wait until Alex was completely healed before he put someone at our doorstep seeking encouragement. I was happy that I was there for her.

I do have something that I would like for you to pray about in addition to Alex's complete recovery and that is this. During a time of crisis like the one we're in the middle of stress becomes a major factor in a marriage. Mary and I rarely see each other these days with her at the hospital and me in Baton Rouge and even when we are together our time is very limited or it's not the right time to talk and so things go unsaid. I know for me, I seem to be on edge most of the time, I lack patience and am not responding to Mary's needs like I should. Honestly sometimes I don't feel much like responding to her needs but I know that is Satan just trying to drive a wedge between us. It seems like we can't be together for 10 minutes or even talk on the phone these days without one of us getting mad or hurting the others feelings. So I ask you to pray for Mary and me not just for strength in dealing with Alex's sickness, but that God would strengthen our marriage giving us patience for one another and deepening the love that we have for each other. I'm asking for God to do a miraculous work in our relationship. Well that's about as tranparent as I'm going to get for one night, as always thanks to all of you for your love, support and most of all for your prayers and words of encouragement.

Kell Johnson
Mary's loving but still needs work husband and
Alex and Taylor's dad

Wednesday, December 10, 2003 11:21 AM CST

Good Morning,

Sorry I haven't written lately, but I've been busy running after Alex with the IV pole. He is feeling stronger every day and finding more and more things to do! We visit the play room about 2 or 3 times a day to play pool and he is also enjoying the miniature air hockey set his friends from DTP sent.
We were very sad to hear about Coach Thib's and Mrs. Lisa's house and want them to know we are praying for them and their family. We are very thankful that noone was hurt. Alex has been enjoying opening his mail. Thanks for sending the cards and treats. We have enjoyed many surprise visits which help pass the day. Thank you to the elders who came by to visit and pray for Alex. It was a very sweet time. Mom says thanks for the chicken chimichanga from the Blue Tomato! What a treat! Alex really got a kick out of the official football signed by the Chapel Elders. It will be placed carefully among the signed balls, hats, jerseys etc.... from some other famous athletes! We love you all very much.
Thanks to Miss Marsha for the photo signed by Nick. We have it displayed in our hospital room.
Thanks also for your continued prayers for Taylor. He has been struggling with the demands of school and wrestling. His mind is constantly on his brother. We have been so impressed with his strength and faith through this difficult time, but need to be reminded that he is still a 15 year old boy with lots of fears and questions. We are very grateful to the staff and friends at Dutchtown High who have chosen to minister to and look after Taylor. Thanks also to our Chapel family who have kept up with Taylor and their desire to help. Kell's sister,Lynda came in town Monday and we quickly put her to work cleaning, cooking and running errrands. Thanks to Peter her husband for letting her go for a week and thanks to Lynda for her kind and generous heart. We love you all.
I know we keep saying the same thing over and over, but we want everyone to know how grateful we are for every prayer and act of service. We would not be able to go through this alone. It is too overwelming. Thank you, Thank you, Thank you!!!!!!!
Please continue to pray for the doctors, nurses and other related staff who are working together diligently to heal Alex. We are in a holding pattern right now-waiting for Alex's counts to come back up and praying that we see healthy cells when they do. Those of you who know me well know that patience has never been a fruit of the spirit that I have truly mastered. Well God has chosen this situation to teach me patience and I Got IT!!!! Our days have gone by quickly and we are at peace.
I will be spending some time with Taylor tonight and Thursday. We may even do a little Christmas shopping. I hope I remember how to act in the real world!! I don't want to embarrass my son.

In Christ,
Mary

Sunday, December 7, 2003 3:04 PM CST

Hi Everyone,

Sorry it has taken so long for us to update. We have been on a roller coaster around here for the last week. The words to a song I've been listening to lately have helped to carry me through.
"I haven't got the strength today to reach out
and take your hand, but I know beyond the shadow of a doubt that you are holding me in your embrace tenacously and desperately and tenderly your singing to my soul.
Trust me child you will not be forsaken
Trust me child though your world be torn and shaken
Know me child in my obedient and holy son
that when you do not know the way God leads
you will know your God.

We do not know where God is leading us, but through the prayers and acts of service from the body of Christ, we are experiencing the peace of God that surpasses all understanding.

Alex has been feeling well the last few days and is in good spirits. His total white blood cell count is low which is to be expected. The new chemo he is on is supposed to "wipe the bone marrow out". He will be extremely neutropenic for 10 to 30 days. This means he will be very open to infection. Please pray that his neutropenic state be closer to 10 days than 30 and that he will have no infection.

We love you all,
Mary

Wednesday, December 3, 2003 3:15 PM CST

As you know Alex had a series of tests on Monday. The bone marrow test did indicate that the first round of chemo treatment did not respond as they would have hoped and the tests on the skin rash showed leukemia cells. However, all other tests were clear. Alex will begin a new chemotherapy plan on Thursday beginning with a spinal as last time. He will receive the treatment for 5 days straight and then they will watch and wait. After the five days Alex will again be in a neutrupinic state, which means he will be highly susceptible to infection (mainly from himself) for 10 to 30 days.

Obviously this is news Mary and Kell did not want to hear, but they are doing well and preparing for the next round. Please check links below to read about pray requests, phyisical needs,(Kell and Taylor could use some home cooked meals) and information on having your bone marrow tested. Bone marrow information is under Blood Donation.

Alex did have a good day today and was in good spirits. He continues to run a low fever, but doctors believe this is due to the AML and not infection. Please keep those cards and letters coming - getting mail is a big highlight for Alex. A large paper Christmas tree will be hung on the wall in Alex's room. I thought it would be fun for him to receive paper ornaments in the mail to decorate his tree. Be creative and let's see how many different locations from which he can receive ornaments.

God Bless,

Susan Mayeaux
(For the Johnson Family)

Tuesday, December 2, 2003 5:29 PM CST

Just wanted to write a quick note to say there are still no test results. Alex had tests done till late in the evening yesterday (Monday) and as of around noon today, Mary did not know any results. Alex's doctor is out sick, and Mary was waiting for his partner to come by. There will be another "round table" meeting, but she did not know when. No chemo will start until the meeting is held. Kell went to work today to play "catch up" and Taylor went to school.

Prayer Requests:

1) For Mary and Kell for strength and courage as they wait for test results.

2) For Alex - he is still running fever and is frustrated. Pray for strength, mentally and physically, as he heads into a stronger chemo treatment.

3) For wisdom for the doctors treating Alex as they plan the next course of treatment. For healing for Alex's head doctor - that he would be able to see Alex and talk to Mary and Kell soon.

4) For Taylor as he tries to maintain as normal a schedule as possible.

5) Alex will need a bone marrow transplant. Please pray that an exact match will be found during the right time of treatment.

Thank you again for keeping up with Alex and the Johnson family. They truly appreciate your prayers and need them now more than ever. As soon as I hear anything more I will write again.

Susan Mayeaux
For the Johnson Family

Sunday, November 30, 2003 8:54 PM CST

On behalf of Mary and Kell I would like to thank you for your prayers and concern for Alex and give you a brief update on his progress. As you know, Alex came home last Monday evening to spend a few days at home before beginning his second phase of the chemo treatment. He enjoyed time with friends and family and his dog, Flash. The family had a good Thanksgiving and even decorated their Christmas tree.

Alex was scheduled to go back to the hospital on Monday morning, but due to a fever which began late Saturday night, he returned to the hospital a day early. The leukemia has not responded to the first set of chemo treatments. Alex will undergo several tests (bone marrow, etc.)tomorrow and begin a different set of chemo drugs possibly on Tuesday.

Mary and Kell ask for your prayers in the following areas:

1) That the leukemia would respond to this next set of drugs;

2) That Alex would remain fever free;

3) For Alex - for strength to endure the stronger chemo treatment;

4) Wisdom for all the doctors;

5) Strength for the family.

For those in the Baton Rouge area, there will be a blood drive for Alex this Monday, Dec 1, at The Chapel's LSU location on Dalrymple Drive, Room 1 and 2. The drive will be from 2pm to 8pm. The Ochsner blood mobile will be present.

Again, thank you for your concern for Alex and the entire Johnson family. They truly appreciate your prayers. I will update the journal as soon as test results are known.

Susan Mayeaux
For the Johnson Family

Tuesday, November 25, 2003 5:45 AM CST

More than ever before, I am convinced that God performs miracles in our lives today just as he did in the lives of those we read about in the Bible. I also think that if we really think about it, that we experience miracles everyday, I mean what is any answered prayer, if it's not a miracle. I hear people all the time including myself say things like, "Ya know, I was really worried about this or that and I decided to take this problem to the Lord in prayer and the next day this problem was not an issue any longer." (Miracle) Or "I really didn't know how we were going to make it financially when Bill lost his job, but as I began to pray, I felt this inner peace and I knew it would be okay. Two weeks later Bill was hired by ABC company making a little more than he was before, so God really answered my prayers in that situation." (Again Miracle)

It doesn't have to be Red Sea, Water into Wine type events to qualify as a miracle. How about the young student that leaves the security of his or her home and takes up residence at a large university where he or she feels so out of place and very alone. Perhaps college isn't going so well for this student and pressures from home to make the best of grades in order to get into med school are just more than he or she can handle. Maybe they turn to drinking or other things to releave some of the pressure, but they soon learn that the problems haven't gone away, they were just hidden for a short time. He or she now feels worse than before and wonders how they can deal with even going to class, but they get up and go anyway. On the way to class they see a sign that announces a concert at a local church there on the campus and he or she thinks, I like concerts and I can walk there from here, so maybe I'll give it a try. He or she goes to this concert and is greeted at the door by someone his or her own age that actually seems glad to see them. Perhaps he or she hasn't had a kind word spoken to them since they've been on campus and this may be the first time that anyone seemed to be glad that they were anywhere. He or she goes inside and sees lots of others his or her own age seeming to have a good time enjoying each others company while eating pizza and sipping on Pepsi. By the end of the night, he or she has attended a concert, met new people and perhaps made new friends, had a few slices of pizza and above all, heard the Word of God delivered in a way that he or she had never experienced. Maybe now surrounded by these new friends, The Good News really did sound like The Good News and he or she decides that they are tired of the loneliness and want what these others kids seem to have, so he or she cries out "Lord I'm sorry I've ignored you for so long, I can't go one more day without you in my life, please come into my life and be the Lord of my life." (Big Miracle, really Big Miracle) The amazing thing is that it happens everyday all over the world, but in many cases it goes un-noticed by most of us.

Last Monday, the doctors were preparing us for the worst with Alex, but God had other plans. Yesterday a week to the day, Alex, Mary and I walked out of the Hospital to come home for the Thanksgiving holidays. At Alex's request we hit the drive-thru at Taco Bell to grab a snack for the ride home and enjoyed each others company like never before.
Taylor was at home waiting on us and even popped a lasagna in the oven for us so we could eat dinner together as a family. Once we were home Alex just kept walking around the house I think glad to be unhooked and at home for the first time in many many days. As many of you know Alex has missed his dog Flash very much and Flash has slept with him since he was a very little boy. It was music to my ears last night as Alex was headed for bed and he called "Come on Flash" and Flash broke into a run and beat him to his room. (It's okay we cleared Flash with the doctors and yes she got a bath last night) All really big miracles, including Flash getting a bath. Wednesday we go back for a check-up and then back home, we go back again for a check-up on Friday and then back home until next Monday. Next Monday Alex continues with his chemo.

Please be in prayer that Alex would have a wonderful trouble free stay here at home and that his check-ups would go well so there would be no reason to go back to the hospital before next Monday. As always we thank you for your prayers and support and I also want to give a special thanks to the ladies that were part of the "Maid Brigade" yesterday that made coming home so nice. Mary was so delighted.

As I told a dear friend yesterday, this is certainly not the path I would have chosen for God to reveal himself to us, but I'm really starting to understand with a deeper understanding, that God really does have more experience at this than I do and I need to learn to just believe and follow him one step at a time. I'm learning that with each step God reveals something new to me. Each step is an opportunity to see God at work in my life. God has a specific purpose for each step and I have to be patient enough to wait on God to show me that purpose.

Thanks again to all of you.

Kell Johnson
Mary's husband and
Alex and Taylor's dad

Friday, November 21, 2003 7:19 AM CST

Good Morning Everybody,

Thank you all for all your continued, faithful prayers. As you can tell from Kell's journal yesterday, we are overflowing with love and gratitude for the wonderful power of our God which is displayed so beautifully through the body of Christ, modern medicine and the wonderful staff at Ochsner Hospital. Please continue to pray for our doctors-Dr. Hodes, Dr. Shearer and Dr. Ducos. Each of these doctors brings their individual gifts to Alex's healing process. Not only are they highly intelligent and gifted people, but it is evident that they truly care about Alex. Pray for protection of their families and emotional and physical strength to continue to work in the caring profession. Please also pray for the nurses. They are truly servants of God. Each of these ladies (and Andy) help me mother my son. They work their little tails off and still find the energy to care deeply for our son. This was evident to us Monday when the doctors prepared us for less than favorable news. Several of the nurses were in tears. They kept apologizing, but we were comforted by their compassion.
Alex grew a positive culture on the 18th. The doctors think it could be strep or staff. The other possibilty is that it is a contaminated culture. They have recultured him. If this culture comes back negative, they assume the culture was contaminated. We are praying for a contaminated culture! We are also praising God for the opportunity to continue on our scheduled road map of chemo-and not salvage chemo-It's all relative. He is also scheduled to have a skin biopsy today on the mysterious rash to look for a possible skin fungus. Of course his skin looks much better today. Alex likes to keep those doctors on their toes! They will put him to sleep if they have to do the biopsy. Please pray for protection as there are always risks when anybody is put under sedation.
I found this anonymous poem that is very well known to the cancer community and I think it holds alot of wisdom for cancer patients and those who walk through it with them.

Cancer is so limited...
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot invade the soul.
It cannot steal eternal life.
It cannot quench the Spirit.
It cannot lessen the power of ressurrection.

We will continue to keep you updated. We love you all.
In Christ,
Mary

Thursday, November 20, 2003 7:08 AM CST

It is very important to re-visit 2 Corinthians 1:9-11 this morning in order for you to understand the full impact of what has happened over the last three days.

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 deadly peril, and he will deliver us. On him we 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 1:9-11

This past Monday morning, I awoke around 4:00 a.m. with the usual knot in my stomach and a the feeling of being totally alone. I immediately lifted my thoughts toward Heaven and prayed "Oh Father, please touch Alex today and pour your blessings upon us." This is when I sat up, opened my Bible and thumbed through and stopped at 2 Corinthians Chapter 1.

As I began to read through verses 9 through 11, I knew in my heart that this was the Word for me on this day. As a matter of fact this was just the scripture I needed to see on Monday because the day would eventually bring about events that would have me clinging to every word of theses verses. You see, that very morning Mary and I were scheduled to meet with the doctors for a progress report on Alex's progression. After getting Taylor off to school at 7:00 a.m. I called Mary at the hospital and read this Word to her. She seemed to uplifted by hearing it, but I could detect worry in her voice as she asked "What time do you think you'll get here? Alex is asking for you." The hours prior to a progress report is always a time of great anxiety for us, as all sorts of things run through your head.

Well I arrived at the hospital later that morning and watched a bit of Finding Nemo with Mary and Alex, but really began to refocus on 2 Corinthians 1:9-11, because I really felt in my heart that I needed to be standing on these verses on this day in particular. Once again, I began getting that unexplainable Peace. I began watching Alex laugh as he watched his movie and I watched Mary as the worry seemed to subside. Now it's about 11:00 a.m. and we are counting the minutes in anticipation of our 12:00 P.M. meeting. Well 12:00 comes and the nurse stops by to tell us that we are about ready to begin. Once we arive in the conference room we are told that Dr. Hodes is finishing a procedure and will be delayed a few minutes so they send us back to Alex's room to wait a bit longer. We sit and wait, Mary and I glance at each other and that worried look is back on her face and I whisper to her "It's going to be okay, remember, God is in control." She thems does her best to give me a smile, but I see the tears starting to well up in the corners of her eyes, meanwhile Alex is laughing his head off at Nemo. The nurse re-enters the room and says, Dr. Hodes is here.

Let me stop here for a moment and paint a picture for you of what these meeting typically look like. We are ushered into a small conference room only about 100 feet from Alex's room where we usually find Dr. Hodes, Alex's Hemotologist/Oncologist, Dr. Hodes clinic nurse Collette, the hospital social worker, the on duty charge nurse, the woman in charge of collecting all of the data on Alex's case and the Child Life Director that is in charge of keeping Alex occupied with games activities and so on.

On this particular morning we had all of the above plus Dr. Hodes two partners, Dr. Shearer and Dr. DuCose. W
He began with introductions to those that we hadn't met yet and began by saying "We all wanted to meet with you today to give you an update on Alex's condition and to let you know how the chemo is working. Unfortunately, the news I have for you today is not very good." I felt as though someone had their hands around my throat and wouldn't let me breath, Mary began to fight back tears and we both prepared ourselves for what he was next going to say. He then said "With all of the blood test we have been running over the last few days and with results from earlier test, early indications tell us that the chemo is not doing what we had hoped it would do." I don't think I can put into words the pure horror of hearing what he just said, I felt like I had been thrown back to October 17th and was revisiting the single most worst day of our lives when Alex was first diagnosed.

Now let me stop once more to give you a shortened biology lesson of what is going on in Alex's body so you will get the full impact of these series of events. I don't profess to be a great teacher, but here it goes.

When Alex was first diagnosed with leukemia, it was through blood work that found the problem. In a body without leukemia, the bone marrow produces blood cells and when they are first produced, they start out as what they call blast cells. We all have these blast cells and are in simple terms new cells that haven't completely developed into mature cells. At the beginning of the cell production genetics gives these blast cells their orders and tells them what type of cells they will grow up to be, what their duties are and when they will die off to make room for new cells. This process when in perfect working condition makes sure that the body receives the right amount of certain cells and that when they begin to outlife their usefulness, they die off and make room for new cells that are full of energy. A group of very important cells are ones that I call the Pac Man cells. Their job is to look for cells that are not developing properly and literally chase them down and gooble them up geting rid of. This includes cancer cells. What I was amazed to learn is that we all produce cancer cells everyday, but these Pac Man cells track them down and get rid of them keeping us healthy.

In Alex's case, one of these cancer cells went undetected and began multiplying in his body at a very rapid pace. Because these cancer cells never reach maturity, it doesn't take them as long to reproduce as it does the healthy cells. The result is that the body begins to fill up with these cancer cells and they begin to squeeze out the healthy cells, and because these cancer cells really don't know how to do anything but reproduce themselves, they rob the body of the benefits of the healthy cells. The other thing is that these cancer cells have incomplete orders from the beginning and another result is that these cells have not been told to die off, so they keep going and going.

The chemo Alex has been on is designed to kill off these cancer cells but at the same time it also kills off the good cells. During the chemo the doctors continue to do blood work to check the level of white and red blood cells as well as the number of blast. During Alex's chemo we have been seeing good results indicating that the chemo was doing it's job. Once they stopped the chemo they began giving Alex a drug called Nupagen that is designed to stimulate the bone marrow into producing new blood cells. Once again chemo to kill blood cells, Nupagen to stimulate bone marrow into making new healthy blood cells.

Now back to our meeting. Dr. Hodes told us that what they were seeing was a large number of blast cells in Alex's blood, but that they were not completely sure if these were good or bad blast cells, but, that they were very confident based on case study after case study that when they see this high of a blast count that it most usually meant that the cancer cells were reproducing, thus the chemo wasn't working. Dr. Hodes then said "We need to draw more bone marrow from Alex so we can see exactly what kind of blast these are, but I am almost certain from my 25 years of practice that these will turn out to be bad blast cells. That being said, there's always a chance that we could be wrong, but I'm really afraid that I'm going to find that the chemo is not working as we had hoped." I don't think I have to tell you how we were feeling at this time. Mary began asking lots of questions as I sat there speechless and they gave us a lot of answers that began to just wrap themselves around my confused mind. We then began discussing our (where to from here plan) and they said we needed to move to a much more aggresive treatment that they referred to as (Salvage Chemotheropy). I kid you not, what a horrible name they put on this treatment, but the name truly discribes the treatment. To me this meant last resort type of stuff, I felt they were telling me that they were now switching gears from curing Alex of luekemia to now focusing on just saving his life. I confess my hope level was dimenishing very quickly, but I kept focusing back on the message of 2 Corinthians 1:9-11 and would gain strength. Even though the doctors said we still needed to wait on the bone marrow results on Wednesday, we had just been told that they were all but certain of the results. After more questions and answers, we went back to Alex's room with the best faces we could put on for Alex. We simply told him that we needed to do another bone marrow on Wednesday andthat it might be necessary to adjusthis chemo a bit so we could make sure to get the best results. Alex listened intently as usual and said, "Okay" and went back to watching T.V.

I have to tell you this real quick, the previous night, Mary, Taylor and I took Alex downstairs to the swimming pool at the hotel that's connected to the hospital and as we entered the elevator to go down, out of nowhere Alex said, "I'm not going to die". Both Mary and I said, "What?" and he repeated it, "I said, I'm not going to die", I simply responded with, "I know your not buddy."

Well after going back to Alex's room at about 2:00 p.m. we prepare to wait for Wednesday and the bone marrow. Duringthat wait, they begin preparing us for what they refer to as (Salvage Chemotheropy) as this confirmed to us that they were not expecting good news at all. So we wait and wait and think and pray and worry and pray and wait and pray some more.

On Tuesday I posted a prayer request on this site that we needed good news from these test, but I didn't go into much detail or even the severity of what they had told us. I couldn't bring myself to speak it let alone post it on the website. Later in the day we keep Alex busy which helped us keep our thought on him rather than the meeting of the previous day, but this evening, I would go home to spend time with Taylor and to tell him aboutthe same story we told Alex, that they may need to adjust the treatment. Due to pure exhaustion, I prayed myself to sleep as soon as my head hit the pillow.

Wednesday morning came early as usual around 4:00 a.m. with that same knot in the stomach and that aweful feeling of being so alone. My thoughts once again turned to heaven as I started to pray and I had a loss of words. I didn't know what to say to God or how to ask for what I needed. I then prayed, "Father send your Holy Spirit to teach me how to pray in this situation because I am so confused and am at such a loss right now." I then immediately went back to 2 Corintians 1:9-11 and began claiming this for my family. For the next several hours, I began speaking to God as a son would talk to his eartly father. I began asking questions of him and asking him for answers in this time.
I remember telling God that Alex belonged on a football field playing the game he loved, not on an operating table, that he was supposed to be going to school,playing with his friends and not stuck in a hospital room. And then I remember asking God this very question, "Father, if your miracles are not meant for 10 year old little boys, then who are you saving them for? Alex needs your touch and he needs it today. Please Father show us your loving power today." At that moment I moved from asking God to thanking God and began to feel that inner peace once again and I knew in my heart that my prayers had been heard and were going to be answered.

Due to major traffic issues, by the time I reached the hospital, Alex had just gone into surgery, as I met Mary on the stairs, I looked her in the eyes and said very condidently, "God is in control and everything is going to be okay." I reminded her of 2 Corinthians 1:9-11 and told her that this was intended for us. Well Alex flew through the procedure and after a short post-op went back to his room to wait. Alex requested Popeyes fried chicken so off I went to fill the order, when I came back he ate and we watched more movies to pass the time while we waited and waited and waited.

At 3:30 the nurse came and said that Dr. Hodes and his staff were in the conference room ready to give us results. During the walk the nurse whispered to Mary, "I;m not supposed to say this, but I think it's good news." Once in the conference room, we were the only ones in there and Mary looked at me with hopeful anticipation and said, "The nurse just told me that she thought they had good news." Then she said to me for what reason I'm not sure. "Stop smiling!" Then in comes Dr. Hodes and his staff along with Dr. Shearer. He then said, "I am pleased to tell you that we didn't find what we thought we were going to find." He then said, " I want you to understand that what I am telling you is good news. We did see some bad blast in there and that's to be expected, but not nearly as many as we had thought. It is our opinion that we stay the course with Alex's treatment because we now feel we are getting favorable results." Can I hear a Praise God? It seems that the drug Nupragen has really stimulated his bone marrow and he is producing lots of new cells, more than what they typically see and that most of the blast they were seeing were actually good blast. I can't tell you how thankful we were to hear this, it was as if Mount Rushmore had been lifted off of our shoulders. Our God is truly an awesome God.

Finding 2 Corintians 1:9-11 was truly a blessing, believing it and resting in it was my comfort, but watching it come to life in our lives was truly a miracle. The answer to the question I asked God is, "Yes miracles are for 10 year old little boys as well as anyone else that approaches the Throne of God in total desperation claiming God's promises for our lives and expecting miraculous results.

God is truly present and in control of this situation. If you have been following this website and you have had questions in your life about your relationship with God, I would encourage you to spend time in his word and in prayer asking him to draw you nearer to him.

If you feel like you are living a life without God, then I want you to know there's Good News for you. God sent his only son Jesus Christ to die on a cross for our sins so that we may be forgiven and enter into a relationship with him so that we would have everlasting life with the Father in Heaven.

God is real and I know it more today than ever. If you have questions or want to know more about God and his son Jesus then please let me know. I want to make sure either I or one of the Pastors from my church can reach you by email, by phone, or in person whichever you prefer to discuss your questions and needs. If you don't want to poist that here, I understand. You can simply send us an email at kellandmary@aol.com and we will handle this in a private manner.

I give all the Praise, Honor and Glory to God for this report that I was able to share with you today. We love you and continue to ask for your prayers.

Kell Johnson
Mary's husband and
Alex and Taylor's dad

Tuesday, November 18, 2003 6:38 AM CST

I'm going to start out this journal today with specific prayer request. This coming Wednesday morning the 19th at 8:00 a.m. Alex will undergo a bone marrow aspiration to see where we are with the white blood cells and also the blast. We need favorable results from these test. We need the blast to be below 5%. Yesterday we met with the doctors and they began preparing us for the chance that the results may come back unfavorable. An unfavorable result would mean a different approach in his treatment. We would prefer not to explore different treatments, but know that what we are presently doing is working.

Yesterday morning when I woke up, I came upon 2 Corinthians 1:9-11 and it says:

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 deadly peril, and he will deliver us. On him we 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.

Alex is fighting so hard and he has such a wonderful attitude, but we need your prayers for his strength and healing and for the doctors to have wisdom in treating him during his healing process.

I can't tell you how wonderful it was to see so many of you this past Sunday at church. As Dennis was speaking yesterday on how we as a body need to reach out to those in need, I can certainly testify that as one that has been on the receiving end, that we have been blessed by The Chapel's love, generousity, and most of all by your prayers. The choir must have known Taylor and I were coming, because the song they sang ministered to both of us so much. Please know how much I wanted to be up there with you and how much we love you all. Ken you always make me cry.

After church Taylor and I joined the Kearney's along with Christy and Rachel Brokmeier for lunch at DeAngelo's for a low cal. meal, yeah right. Thanks, it was wonderful. Ya just can't get a good calzone at Ocshner for some reason. Rachel, Jonathan and Drew, Taylor really enjoyed spending time with you at lunch, thanks for being there.

Once again, thank you all for all you do, you have truly been a blessing to us.

Kell Johnson
Mary's husband and
Alex and Taylor's dad

Sunday, November 16, 2003 10:15 AM CST

"Where can I go from your Spirit? Where can I flee from your presence? If I go up to the heavens, you 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." Psalm 139:7-10

Good Morning Everyone,

Thanks Keith for reminding me of this verse. I have clung to it the past few days. We have good news. Alex's total white blood count (ANC) is 790! We are on our way out of Neutropenia. I am pretty sure we will have our second bone marrow aspiration Tuesday. These results will tell us how many blasts (leukemic blasts) are in the bone marrow. Less than 5% is good, 0 is Terrific. We are going for terrific!!! The doctors substituted the amphothericin for another antifungal called Viriconisol(I think thats right- My brain hurts from spelling all this medical stuff). This seems to be kinder to Alex's skin, but is causing alot of nausea. We are really struggling to get Alex to eat. If things don't turn around soon, the doctors will begin feeding through an IV. Even though they tell me this is fairly common, I am really praying we don't have to go that route. Please pray for wisdom. We are trying to again be very creative in offering high calorie foods ect... The doctors and dieticians keep mentioning pediasure etc.... We have tried a variety of these supplements and Alex is not impressed. I can't say I blame him. They're pretty nasty.
The pain in his legs has decreased and he is able to bear weight on his right leg. We have asked for a physical therapy referral to battle muscle weakness from all the time in bed. My niece Kristen and my friend Susan Ducote will be very happy! Kell and Taylor went to church this morning and will come up to the hospital this afternoon. If Alex feels up to it we are planning an early supper around the pool!! I hope we can pull it off. I think it will really lift his spirits.
Thanks again for your continued support. Checking our messages, receiving mail and the occasional visitor are the high points of our day. We love you all.

In Christ,
Mary, Kell, Taylor and Alex

Saturday, November 15, 2003 8:34 AM CST

Hi Everyone,
Sorry about the delayed update. Alex has been keeping us very busy and the doctors scratching their heads. He continues to run fevers, but culture after culture reveals no infection. According to the doctors and article after article I read this can be very common. Due to the amount of antibiotics and the antifungal medicine he is on, the infection may not grow out on a culture. The other piece to the puzzle is that all the medications he is on can cause fever. The hives/swelling he has on his legs(i.e. erythema nodosum) can also cause fever. With Alex's white blood cell count so low, they can't take the chance of removing any of the antibiotics. We just have to sit and wait for the counts to come up and the fevers to go away. The oncologist has consulted with an infectious desease doctor to see if there is any further testing that can be done. They are testing for cat scratch fever. Yes, it is a real disease! I've always liked the song, but don't want my kid to have it.
Alex is getting frustrated and is ready to go home. Please pray that we would be creative in thinking of fun diversions for him. We are looking forward to watching the Tigers whip up on Alabama tonight. Sorry Mrs. Hester. To my friends at DTP, good luck on the garage sale. Now I know you like me, you really like me. I'll be pulling duty for you guys for the next 20 years!!! I would also like to thank the Prairieville Broncos for sponsoring the Buffalo Bowl. You all have touched us deeply. Alex was so excited to see his name in the paper. Thanks also to everyone again for all your love and support. We Love you.

Wednesday, November 12, 2003 11:54 AM CST

"Some trust in chariots and some in horses, but we trust in the name of the Lord our God." Psalm 20:7

Dear Friends,

I have clung to this verse the last couple of days. I have substituted the words chariots and horses for the words medicine and doctors. We are very grateful for modern medicine and committed doctors, but I needed to be reminded that our God works through these people. He is in control.
We can not thank everyone enough for their constant prayers and acts of service. It is sometimes tough to be on the receiving end of so much generousity and love, but we have been told over and over again how this situation has witnessed to people.Our desire at the beginning of this healing process was for God to be glorified and who are we to stand in his way.
We have a Praise Report!!!!!
Alex did have to receive an antifungal drug called Amphothericin(I think the spelling is correct). The doctors have nicknamed this drug AmphoTerrible because of the nasty side effects. Alex did experience some (i.e. fevers and chills}, but they were manageable. He told the doctors that "it wasn't too bad". He is trying hard to keep his spirits up and continues to ask very appropriate questions. The doctors say "he is a very verbal child." I wonder where he got that from? We will sit tight and see if this drug is successful in eliminating fevers. Alex's total white blood cell count is slowly increasing as a result of the neutropen shots. He is now an old pro at taking the shots. We have discovered a wonderful drug called EMLA which numbs the skin. Alex instructs me as to exactly when, where and how to apply the cream. Those of you who know Alex well can easily imagine this conversation.
We had a good morning and actually did a little school work.
We took a spelling test and read John Henry. Mrs. Wikman, Alex loved this story. He was familiar with the story, but particularly liked this version.
Thanks again. We love you.
In Christ,
Mary

Tuesday, November 11, 2003 3:20 PM CST

Okay here's the prayer request of the day. Alex is still running a fever and it bounces back and forth between 99 and 102. They have done a culture and nothing developed from that. Right now Alex is getting a Cat Scan to see if he has anything goingon in his sinuses. They are also sayingthat he could have a fungus that could have been caused by the antibiotics. Because the chemo has his white blood cell count so low, they are acting on this very aggresively. Please pray that they find the causeand that it will be easily treated. Please pray for wisdom for the doctors as they are working very hard to find an answer.

Tonight I will be spending the night with Alex and I have finally talked Mary into leaving and spending the night in a hotel for the night. Please pray that I can provide the same attentive care for Alex that Mary has been giving him. Also pray that Mary will relax and get a good nights sleep tonight and that she won't be worried about me and Alex being in a room by ourselves.

Pray that Mary and I continue to comprehend the massive amounts of information that continues to come our way concerning Alex. I know the Bible teaches us to "worry about nothing, but pray about everything" but there is so many little things that keep us on the edge of our seats. Please pray for our strength as a family.

During times of tremendous stress, Satin has a way of trying to drive wedges between people. Please pray that Mary and I would slow down and communicate with each other with clarity and patience. Sure,we look like nice people, but you should see us the moment you leave the room. Just kidding, our patience with each other could use your prayers.

Taylor has been a champ through this whole process, but I wonder sometimes if his needs are being met. He seems okay, he talks very open with me and we have done everything we can think of to make sure he realizes he's just as important to us as Alex. So just pray that his needs are being met.

Thanks again for your prayers and support.

Kell Johnson
Mary's husband and
Alex and Taylor's dad

Monday, November 10, 2003 11:32 AM CST

It's been a few days since my last update. As many of you know, I had to travel to Dallas late last week for meetings as I had a tough time leaving town with Alex in the hospital. But, it all worked out well and I did receive an inner peace prior to and during my trip.

This morning Alex is feeling fine, he still ran a low grade fever last night, but seems to be eating and sleeping better. The stomach problems seem to be lessening and the doctors will be doing an ultra-sound today to see if there is anything going on with his central line to cause the pain in his shoulder. They are continuing to monitor the rash he developed on his back side, but it really doesn't seem to bother him very much, if at all. I told him he needed a little "Boudreaux's Butt Paste", but Alex fired back at me and said, "DAD, I don't have diaper rash". I don't know, I thought it was funny.

This morning I spoke with Alex on the phone and it was like talking with him before the diagnosis. He started out by saying, "Dad, the Tigers are ranked number 3 in the country, do ya think we'll play Oklahoma for the national championship?" and I said, "Buddy I don't know, but wouldn't that be cool if we did?" and he said "yeah that would be sweet wouldn't it dad?" and I said "It should would."

I want to thank God here publicly not only for the healing work he is doing in Alex's body, but I want to thank Him for the tender moments he has allowed me to have with Alex as well as Mary and Taylor. Just last night Alex asked me, "Hey Dad, can I have a hug?" and I have to say that that was the sweetest hug I had ever received from him.

Saturday during the day, Taylor had a wrestling scrimmage at Catholic High where he won two out of three of his matches. He really looked good on the mat. Taylor is doing fine, but misses all of his friends from church and wants them to know that he will be seeing them very soon.

Well I will try and update the site tomorrow to let you know how things are going and how God continues to Bless us through this entire healing process. As always, thank you all for your continued prayer and support.

Kell Johnson
Mary's husband and
Alex and Taylor's dad

Sunday, November 9, 2003 5:58 AM CST

Good Morning,
We are in need of prayer. Alex is running a fever and is experiencing right shoulder pain around the site of the catheter. He has also developed a skin rash that has the doctors and nurses scratching their heads. Don't have much time to write. Wanted everyone to know.
In Christ,
Mary

Friday, November 7, 2003 4:10 PM CST

"The Lord is wonderfully good to those who wait for him and seek him" Lamentations 3:25

I have rested on this promise as I have waited and waited and waited on doctors to reveal test results. It is 4:15 on Friday afternoon and the doctor has finally come in with the bone marrow results. So sorry to keep everyone waiting. When we were first diagnosed with AML, Alex's bone marrow was filled with 100% cells 85% of which were leukemic blasts. Leukemic blasts are immature white blood cells that do not mature to perform any useful function. They multiply continuously, provide no defense against infection, and prevent other healthy,mature white blood cells from developing. Today Alex's bone marrow contains 5% cells 30% of which were leukemic blasts. The doctors are very pleased with this result and told Alex it was a very good progress report.
Thank you so much to your continued prayer and support. Kell and I have been at peace the past few days. I know this " peace that surpasses all understanding" is a gift from God and is a result of the body of Christ in action. Kell said he actually was able to focus and comprehend new information at his sales meeting and Alex and I have been chilling in the hospital room. Taylor seems to be doing better and is being tended to by our good friends, the Hugenels and my brother and sister-in-law, Ted and Annette Arthur. You all notice in takes two families to handle my son! Just kidding Taylor! I LOVE YA, LOVE YA, LOVE YA

Alex had his first Neupogen shot today. Neupogen is a drug that stimulates the bone marrow. He will receive a shot in his thigh each day for 5 to 7 days depending on results. The shots are painful and he is a little anxious. Please pray.

Thanks again for all your love. We love you all very much.

In Christ,
Mary

Wednesday, November 5, 2003 9:12 AM CST

My journal entry this morning is going to be a bit shorter than usual, but I wanted to give you all a quick update on Alex's condition and what our prayer needs are.

Alex has been doing well while on chemo this week, very little if any fever and a good healthy appetite. As part of his treatment the doctors give him a pretty heavy dose of steroids, which gives him that appetite, but also makes him very irritable. I'm not sure who needs prayer the most, Alex for his irritability, or Mary and I for having to put up with it, perhaps it would be best if you would cover us all in your prayers concerning this matter.

Today at 10:00am Alex is having more bone marrow withdrawn so they can take a look to see how the treatment is progressing. This is a critical moment in this healing process. Please be in prayer that all the results would be favorible to Alex's recovery. We will be on pins and needles waiting for the results which won't be complete for a couple of days.

Please pray for Taylor, he is getting a bit anxious about catching up on his school work from the time he was out. He is also very concerned about his little brother and has a hard time focusing in on his day to day responsibilities.

I fly to Dallas tomorrow for Thursday and Friday meetings and am having a hard time getting myself mentally prepared to be away from home even for such a short time. I know I probably shouldn't, but I am feeling guilty for having to make this trip. Please be in prayer for these things.

Thanks

Kell Johnson
Mary's husband and
Alex and Taylor's dad

Monday, November 3, 2003 6:50 AM CST

"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

I had to stand on this promise this morning as some mornings I feel very tired and weak, but once I can turn my focus back on our Father and depend on him for strength, I can feel my spirit lifted and a sense of hope and renewal moves through my being.

My dear friend and singing buddy Stephen Street told me one morning at church about a year ago that "We need to stop telling God how big our problems are and start telling our problems how big our God is." At the time he told me this I really wasn't experiencing any major problems in my life but it sounded like something I needed to tuck away in the old file cabinet for future reference. Well guess what? My family and I have run into a problem that I can't fix, but Our God is bigger than this problem and he knew it was coming even before Alex was born. I am believing that God is all over this problem and is working as we speak to heal Alex completely from this disease. More than that, I am also believing that God is using this time to demonstrate to us His perfect love, His Mercy and Glory and His Mighty power over the evil one that is attempting to draw our focus away from Our Father. I can stand here today and claim Victory for Alex and my family knowing that God is in control and has secured the Victory for us through His Son Jesus Christ. "By His stripes we are healed." Amen.

Stephen, I bet you may have even wondered yourself why you told me what you did when you did, but I have to believe it was God's timing in preperation for what was coming.

I asked God just the other night. "Father with your power to create the universe and to breath life into every living being, why don't you just reach down and touch Alex and rid his body of this disease so we can resume our ordinary life?" Well I believe that God is speaking to my heart and revealing the answers to my question in many different ways. What I am beginning to realize is that perhaps God isn't interested in me and my family just returning to what we consider to be an ordinary life. Perhaps his plan for us is for us to live a supernormal life, speaking the truth and being an example of what God can do in the lives of simple, ordinary people.

I watch Alex in amazement as God touches his little body. I can't say he hasn't suffered, he has. But when his needs have been made known either through this website or by word of mouth to friends and family and people begin to pray for his specific needs, God has been there to answer those prayers. Those of you praying, you need to know that God is answering your prayers and you need to feel secure in this fact. When Alex gets a fever, the word goes out and we pray. Result, fever goes away. Sure the doctors give medications and we are blessed that God has blessed these wonderful healthcare providers with the knowledge and desire to help and cure the sick, but I also believe that our mighty God uses them in this healing process.
While we were at home for a couple of days, Alex developed severe pain in his right arm and shoulder as well as his back. He also ran a low grade temp. at night. Once back in the hospital, they ran test to look for blood clots and an MRI to look for anything nasty going on. During the MRI, both Mary and I were in the room with Alex, and I began to pray that the doctors would find the cause of this pain and that it would be easily fixed. Well after all the test including a blood culture, they discovered he had a very common infection and that they would treat it with antibiotics. I found this to be wonderful knews and realized that I was actually thankful that my child had an infection, but once again my prayers were answered. Listen, after they throw leukemia at you an infection doesn't seem like much. Well they treated him with antibiotics and the infection is going away as well as the fever and the pain. Alex is back on chemotheropy as of this past Friday and doing well. He even gained back 3 pounds that he had previously lost. That's another praise. One thing that something like this helps you to do is to notice even the smallestof blessings and victories and rejoice and give thanks for them.

Alex wants to congratulate his teamates and coaches from the Prairieville Broncos in their victory in the league playoffs this past Saturday and wants you to know he wishes he could be out there with you crashing a few skulls on the football field. Mary and I want to say a special thank you to all the coaches and players as well as their parents and the entire league for their continued support for Alex during this healing process. You have truly been a blessing to our family and we love you and want you to know how special you are to Alex and the rest of the family. God has blessed us through your friendship. Alex also wants you to know that once he kicks leukemias butt, he's gonna be even tougher to handle on the football field.

Once again thank you all for your support, your prayers are truly felt and we ask that you continue to lift Alex up as well as the rest of us. I would ask that you would lift both Mary and I up, as I begin to move back into my regular work schedule and visit Alex in the evenings. This leaves Mary alone in dealing with the day to day issues of Alex's healing process. Please pray for God's strength to envelope her building her up both physically and spiritually during this time. Pray that God would continue to strengthen me that I may be an encourager to Mary and Alex at this time. Please also lift up our 15 year old son Taylor as he continues with school life and that God would usethis time to develop him into a man of God.

As always, please stay tuned to this website to witness God's perfect love and grace and keep those cards and letters coming (a.k.a. message boards)

Kell Johnson
Mary's husband and
Alex and Taylor's dad

Friday, October 31, 2003 8:42 PM CST

Hi Everybody,
We are back in the hosital room. It's 8:45 p.m. and Alex is resting peacefully. It was so great to see my friends and students at DTP today. What a surprise to get such a great send off. The lunch was wonderful. Your love and support are carrying us through this healing process. To our friends at DTH, you touched us so much with your act of support. Alex loves his jersey. We are so lucky to have our son, Taylor attending a school with such loving and caring people.
To our Chapel family, your continued committment to prayer and many acts of service are overwelming. What a beautiful picture of the Body of Christ in action. To our immediate and extended family, thanks for being there. We've been tested greatly over the past several years, but we always come out stronger. Thanks also to all of our friends new and old (and I mean OOOOLLLLDDD) thanks for all your many acts of friendship.
Please be in prayer for infection. Alex is experiencing pain in his right shoulder/arm and back. After an ultra sound and an MRI everything else that could go wrong was ruled out so they assume we are fighting an infection in the central line and at the site of the spinal tap. Temp. is running 100.7. Also pray for peace of Alex and Mommy. Alex is taking ownership of his disease and is becoming pretty knowledgeable about risks of infection. We are so proud of his inquisitive mind, but with his increased knowledge comes increased anxiety. He is also a pretty perceptive little guy and reads his Mom pretty well. We love you all so much and treasure your notes and prayers. We have a Prayer Map in our room and put stickers on all the places where people are praying for us. See Mrs. Kelly we are even working on our social studies in the hospital!!!!

Thursday, October 30, 2003 11:39 AM CST

Hi everybody, it's Mary. You are experiencing a miracle as we speak. I turned the lap top on, found the web site, opened the page and got where I needed to be. My friends at DTP will really appreciate the significance of this miraculous event!!!!! " Kiss my brain" As I hope was expressed through others when I couldn't find the words, your thoughts, prayers , gifts, card, calls and acts of service have carried us through this healing process. I would like to take a minute to speak to my sweet students at DTP who I miss terrribly.
"I Miss You, Miss You, Miss You and
Luv YA, Luv Ya, Luv Ya"
Mrs. Lorrie, Mrs. Jessica and Mrs. Lisa have been telling me about all the good choices you all have been making
"OH, I am soooooo HAppy"
"Hip Hip HORRAY!!!!!"

Michael,
I hear you are working really hard at being a "first time listener" I am so proud of you. Remember to keep everybody on there toes and make sure they put everything back in it's place. I miss your sweet smile and playing with you outside. Remember to share the big wheel. Have fun in Mrs. Parkers class.

Taylor,

I miss your hugs in the morning and your sweet singing voice at morning circle. I know your having fun in Mrs. Reynaud's room . I loved your picture and have it hanging on the wall. It makes Alex and I happy. I'm sorry I missed your party and know it was great!!!!

Christian,
I miss your fun personality. You share your love for life everyday. Have fun with Mrs. Jessica, Mrs. Lorrie and Mrs. Lisa. Be careful driving your wheelchair. Remember to keep your eyes on the road and not the pretty girls passing by!!!

Andrew,
I was so proud to hear you are walking in line with the Kindergarten class. What a big boy! Next time don't hide behind the bookshelves when you get to the library. It makes our principal, Mrs. Stafford VERY NERVOUS!!!!!

ABRAM,
I was to sorry to hear you have been sick. I've been praying for you. I miss your sweet voice calling my name "Maaee" and you telling me "I do it" You go Abram., You can do it. I loved your hand print. You know how much in love your cute hands.

Jeffrey,
I hear you have been such a big bot since I've been gone. Are you eating your lunch? Mrs. Brock says you have been enjoying center time in her room. I miss you lots Jeffrey- J-E-F-F-R-E-Y.

Parents,
Thank you for all your love and support during the most difficult time in my family's life. Please know that I am praying for iach of the children individually and the class as a whole. I know you all must be nervous about how this sudden change in routine will effect your child and may be experiencing those effects right know. Let me encourage you that we have come face to face with the awesome power and grace of Our Heavenly Father during the past few weeks. I know he is in control of this situation and has each of us in the palm of his hand. Mrs. Stafford, Susan Vaugn and the rest of the staff at DTP are committed to quality education for each and every student and will take the necessary steps to make this transition as easy as possible. I love you all and miss your very much.

Love,
Mary

Wednesday, October 29, 2003 7:41 AM CST

WE ARE HOME!!!!!!!! Last night we arrived home at about 10:00 p.m. and within 30 minutes Mary and Alex were sound asleep and slept through the night. Didn't I tell you earlier that if you wanted to see God answer prayers to just stayed tuned to this website. Well we give God all the Praise, Honor and Glory for allowing us to be at home for a couple of days before chemo resumes on Friday. Jan, thanks for having Flash (family dog) here when we arrived. When we left the hospital last night the first think Alex asked us was, "Is Flash going to be home when we get there?" You made Alex very happy. Susan and Keith, thank you so much for dropping off all the goodies last night prior to our arrival, Mary must have told you how much I like your Taco soup.

As Alex goes through this healing process,he is going to be needing platlets and the doctors say it is best if he has two or three directed donors rather than gathering platlets at random. His uncle Floyd has graciously commited to giving once a week and if anyone else is interrested, please get in touch with us and we will supply you with additional information. Thanks for your help.

When Alex was first diagnosed with luekemia, I have to be honest, I was not the least bit interested in what God was going to teach me through this, I just wanted God to fix the problem and fix it now. As a matter of fact, one of our first nights in the hospital I was roamingthe halls at about 2:00 a.m. feeling abandoned by God, not even knowing how to pray due to exhaustion, fear and confusion, I believe I was on the verge of a breakdown. I then spotted the Chapel there in the hospital and I decided to go in and pray. My prayer was very simple and very direct. I prayed "God, I need you here now and I need to feel your presence, I need to know that you are in control of this situation." From that moment on, things began to change slowly, but it began to snowball in the next couple of days and there was no doubt from that time that God was truly present and in control. Our prayer is for a complete healing for Alex and that God would use this time to impact our lives and the lives of hundreds and thousands of others from around the world. Our God is an awesome God and he is working as we speak in a miraculous way. Stay tuned.

Kell Johnson

Mary's husband and
Alex and Taylor's dad

Monday, October 27, 2003 4:28 PM CST

As always I want to start out by thanking everyone that has offered prayers, support, gifts and served us in ways that are just amazing to me. We truly feel the love and I really mean that. Thanks Fred and Elaine for having Taylor over this past weekend, he really had a great time hanging out with the two of you and Erika. Mary wants to make sure that she says hello to all of her students and their parents and wants you to be on the lookout for a special message from her in the next day or two.

Now are you ready for this? Alex is doing so well on chemo and his little body is so strong that now that he is going to be off of chemo for a few days, the doctors are trying to make preperations for Alex to come home for about three days. Isn't that awesome? This was not even a possibility when we first came in. He may come home as early as tomorrow. Last night he had another good night with no fever and a great appetite to boot. Yesterday for lunch he had a big plate of chinese noodles and grilled chicken. This morning he had two ham and cheese omlets, milk and juice. All answered prayers. Please be praying that Alex will in fact be able to come home for a few days and that everything at home would go smoothly.

I want to share just one thing with you that I believe God is teaching me through this experience and it is this. "Simplify your life" My time has been so consumed with trying to meet deadlines, close the next deal, working from home to get more done than could be done in an 8 hour day from the office and I have let work creep into my home life. When you are at home, be at home. Leave work at work it will all be there for you the next day. Go outside and throw that football with the kids, sit down for that tea party when you've been invited. These times are precious and you never know when something will come up that interupt those moments. Home with your family is where memories are made, don't clutter that time with issues that have no business being there. I know from now on, I will jump at the opportunity when I hear "Hey dad will you throw the ball with me?"

Thanks for caring and reading.

Kell Johnson
Mary's husband and
Alex and Taylor's dad

Sunday, October 26, 2003 10:58 PM CST

Another fever free night and good day! Tonight was the last of the induction phase of the chemo treatment. Alex will get a break from being hooked to "the machine" for a couple of days, but will continue to take chemo orally until the next phase begins. His white cell count is almost 0, which is the goal they are trying to acheive. Please be in prayer that God would gaurd him from any infection at this time. Chemo is also very hard on the heart and kidneys, pray for protection of these organs. Alex has many care takers - nurses, techs, etc., which means each one has to take time to get to know Alex and understand him, as well as Alex getting used to them. Please pray that each professional that works with Alex will be sensitive to his needs and that Alex would respond well to them. Alex has been a real trooper so far, but is starting to get antsy and asks the same questions over and over. Bottom Line - he wants to know when this is all going to be over. This is all so much for a small boy to understand, and Alex does have a long journey ahead. Please pray that God would give him the courage and stamina to get through the treatment.

"Praise be to the Lord, to God our Savior, who daily bears our burdens." Psalm 68:19

Saturday, October 25, 2003 6:33 PM CDT

Praise God whom all blessing flow - Alex had another fever free night! Keep up the good work prayer warriors. He had another good day with several visitors to brighten it up. At 2:30 in the afternoon Alex did need to have platelets and was able to receive them from his Uncle Floyd. But afterwards Mary said Alex began to have a wierd reaction; his hair turned silver, he started complaining about tennis elbow and he started acting really goofy! Mary also says Alex's appetite is much better. So far today he's had a cereal bar, some of MawMaw's homemade macoroni & cheese and some beef-a-roni - and this is before suppertime. Tonight, thanks to another of God's angels, Alex will be watching the LSU/Auburn game in his official LSU jersey from the LSU equipment room with #1 on the front, his name on the back, and signatures from Matt Mauck, Michael Clayton, Jack Hunt, and Skylar Greene! Go Tigers!

Thank you once again from Mary and Kell for all of the love and support you have shown to them and Alex. Their desire from when they first heard of Alex's diagnosis was that God would be glorified and His love and mercy revealed; and indeed it has been. May God bless each of you.

Friday, October 24, 2003 10:20 AM CDT

This is the day that The Lord hath made, we shall rejoice and be glad in it. Boy I have to start out with a praise this morning, last night Alex slept through the night without the first hint of a fever. Praise God for that. Earlier in the evening our dear friends the Kearney's came by for a visit and Alex Kearney and our Alex played video games, ate candy, drank juice boxes and watched the World Series. We even got a picture of Kevin Kearney wearing a Marlin's cap. Did you hear that Jonathan, your dad was wearing a Marlin's cap. This morning Mary is a happy camper that the night went so well and you know the old saying, when mama's happy everybody is happy. Yesterday Taylor spent the day at home and then spent time with some of his friends at Dixie Landin and just hangin out. Boy he needed that and I want to thank Levie and Kristy for making that happen. Today is just another day of Chemo and lots of sitting around and trying to occupy our time. Because Alex is such an active little dude, he is itching to get outside and just run around, climb trees and play with his friends and his dog. He still has no real appetite to speak of and even when he does ask for something, his taste buds have been dulled because of the Chemo and nothing taste right. For myself, I am doing as well as can be expected under the circumstances, it's hard watching your little boy go through what he is faced with, but Our God is incredible and he is constantly by our side. It's very hard to explain the sort of peace that I am experiencing right now, and I don't think I can even comprehend the vastness of God's Mercy and Grace, so I am content to receive and experience it and share it with others. I told Mary that when Alex went into surgery to have his central line put in, I closed my eyes to pray for him and I instantly saw Alex lying on the operating table with his face lit enough that I could see him with the doctors and nurses standing around him in their scrubs. I also saw that the doctors and nurses were surrounded by angels overlooking the procedure and at the doors of the operating room were two big burly angels standing guard. At that moment I new all was well. We are expecting another good day today with good reports to share with you tomorrow.
Oh one last thing, yesterday Ms. Kathy came for a visit and one of the things she brought for Alex was a map of the United States and little Bible stickers so we can chart where people are praying from and he thought that was really neat to see all the different states where he is being thought of and prayed for. He even has folks in Saudi Arabia, and London England praying for him.
As always thank you all for your words of encouragement, your prayers and your support, we love you all.

Kell Johnson
Alex's Dad

Friday, October 24, 2003 10:20 AM CDT

Thursday, October 23, 2003 12:32 AM CDT

Mary and I just wanted everyone to know that we appreciate all of the prayers and support we have recieved from each and everyone of you. We have been a bit busy tending to Alex's needs, but we have been able to visit this site to read all of the wonderful messages you have posted. Although we haven't been able to respond to the messages individually, please know that each one has been read and we all thank you for taking the time to send them.

Yesterday, Alex was scheduled to recieve his first dosage of Chemo through a spinal tap. This is administered first to protect the spine and brain from any cancer cells that may try to hide somewhere else in the body. This went very well Praise God. The Intensivist in charge of the ICU was very impressed with the strength of Alex's heart and said that this would be a tremendous advantage to him during treatment. Later yesterday at about 4:30 p.m. he began receiving Chemo in his room through a port that had been implanted in his chest earlier in the week. For those of you who are not familiar with this process, it's just as if Alex were getting fluids through an IV.

Last night he began running a fever around 8:00 and we fought it with prayers and drugs until about 2:00 a.m. this morning. There seems to be a pattern of him running a fever at this time every night, so I would ask for you to pray that he can get relief from this allowing him to have a peaceful nights rest. God has blessed him with a strong will and a strong body and we have not had a problem with him feeling sick other than weak and feverish.

Alex if you don't already know is the toughest 10 year old I know and he is fighting very hard to beat this aweful disease. Our God is an awesome God and we all have a front row seat to witness what will prove to be an amazing work in Alex's life, our life and the lives of countless others.

Please continue to keep Alex in your prayers for a complete healing and that he would continue to be brave and strong during this time. Pray that Taylor would have peace during this time and that we would be able to keep his life as normal as possible. Pray that Mary would get rest and would continue to be cradled in our loving Father's arms knowing that all is well. Mommies don't rest well when their babies are sick. For me, just pray that God would give me wisdom, strength and that I would be a source of encouragement to my family. Pray also that I will be able to juggle all the things here at the hospital I need to handle as well as work and other issues.

We love you all and we thank you from the bottom of our hearts.

We proclaim victory in Jesus Name.

Kell Johnson
Alex's Dad

Wednesday, October 22, 2003 11:41 PM CDT

Mary was able to view the website a few minutes today and is overwhelmed by everyone's love and support. Mary wants you to know that there is no internet access in the room, but she hopes to be able to journal herself soon.

Alex's fever ran to about 2am Wed morning, but they were able to reduce it without taking motrin this time. (It is not good to give a leukememia patient motrin because it reduces their platelet count.) The fever he runs is due to the AML (Acute Myeloid Leukemia), not infection.

Chemotherapy was postponed till later in the afternoon. When Alex went in at 11am as scheduled for the initial injection of medication his platelet count was low, so he had to have platelets first. The spinal procedure went fine. He had what the doctors call "milk of amnesia" and doesn't remember anything. Mary's praise from the procedure was that a doctor told them that Alex's heart is in great shape. The doctor wanted to know if he played sports because he looked at his records and said he maintained a low heart rate even with the fever. This is good to know because some of the drugs can effect the heart. The spinal was around 2pm, then he went back to his room about 3:45 and started an IV with chemo around 4:30pm. Mary said there are about 10 different types of drugs Alex will be receiving and it will be every day for the four week period. He had not yet been sick, but is extremely irritable (quite understandably), sore and becoming very sensitive to smells. Please keep these things in mind if you visit. Although Mary and Kell cherish the support and need to see people, obviously their first priority is Alex. If it looks like Alex is having a bad day, the visit may need to be short. Ladies, no perfume is probably best.

Check links below regarding platelet donations or monetary donations.

Again on behalf of the Johnson family thank you for all the love and support you have shown them. Mary has said everywhere they turn, a need has been met. God is truly being glorified.

"Praise the Lord, O my soul, and forget not all his benefits - who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's" Psalm 103:2-5

Tuesday, October 21, 2003 9:35 PM CDT

I just spoke with Mary. Alex had a restful day, slept most of it. He ate a taco from Taco Bell and enjoyed visits from his football coaches, pastor and elder. Alex's chemotherapy did not start today. She said they were not able to meet with the doctor till 4:00 this afternoon. It was a round table type discussion that included the doctor and social worker to review the treatment plan and to make sure they understood what is about to happen. Mary said it was alot of paperwork to go through. Basically, Alex will start tomorrow at 11:00am with a procedure that will put the medicine directly into his spine; then he will return to his room to begin medicine in an IV. Mary said there are about 10 different medicines that will be given throughout the course of treatment. She said the treatment will last about a month, Alex will go home for a long weekend, then return to the hospital to start the whole process over again for another month.

They have not been able to check out the guest book with everyone's prayers yet, but I read her a good many over the phone. They hope to see it tomorrow. Mary had to get off the phone because the nurse came in and they thought Alex was running fever again. Be in prayer that it is not due to infection.

Tuesday, October 21, 2003 2:04 PM CDT

I spoke with Mary around 10am this morning. She had the following praises: 1) They were finally able to reduce Alex's fever during the night. At the time we spoke he no longer was running fever and was sleeping comfortably. 2) They have a definite peace about staying at Ochsner and the treatment Alex will receive there.

My praise: Kell and Mary are now in the possession of a laptop computer in order to view this website to read everyone's words of prayer and encouragement, and to keep up with work. (Many thanks to the angel who let them use their computer.) Pray that Kell's laptop can be fixed so that he can retrieve his work information. I'm sure as things settle down Mary and Kell will make some journal entries themselves.

To those who wish to make a financial contribution to the Johnson family, an account is being set up at BankOne. More details will follow.

To those who wish to give phone cards or gifts to Alex, please contact Kay Wallace at kay.wallace@thechapelnet.com The family has a long journey ahead and we want to make sure we give what's needed, when needed, and also that we do not duplicate our efforts.

To those who have expressed an interest in helping with the housework/yardwork, you may contact Susan Mayeaux at smayeaux@eatel.net

Monday, October 20, 2003 11:17 PM CDT

Brief History: About a week and a half ago Alex was treated for strep throat, but could not seem to shake it. He was very tired and did not go back to football practice. By this past Wednesday (Oct 15) Mary began to think he may have mono and brought him to the doctor for blood work. The doctor called on Thursday saying the bloodwork did not look good and referred them to the Oschner Clinic in New Orleans. By Thursday or Friday of last week it was confirmed Alex had leukemia, but they did not know which type until today.

Today Alex was diagnosed with Acute Myeloid Leukemia (AML). He went into surgery at 1:45p.m. for a bone marrow and bone chip test and also received a port to begin chemotherapy. Therapy is expected to begin tomorrow afternoon (Tues, Oct 21).

Alex was looking good, was in good spirits, and was busy playing football on his X-box before surgery today. However he did have a reaction to platlets he was given before surgery and at this time (Monday night) Alex is running a high fever. Apparently neither is abnormal, but scary just the same. The family covets your prayers at this time and thanks you for all the support that has been shown.

Alex has already received a blood transfusion (Sat, Oct 18) and platlets today. If you would like to donate blood, plasma, or platelets you may do so through the Blood Bank at Our Lady of the Lake. He will need blood platelets for the next two months. Alex's blood type is "A positive", but you do not have to match Alex's blood type to donate. You can just donate in his name.

Sunday, October 19, 2003 4:22 PM CDT

Friends and family,

Thank you for your concern for Alex and for checking this site for updates and prayer requests on his progress. Please sign our guest book during one of your visits. We will try to keep the site updated daily in these early days, as soon as new information is available.

Click here to go back to the main page.

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