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Tuesday, December 20, 2005 1:25 PM CST
This Christmas we can only imagine what it would be like to have our family complete again. This Christmas we celebrate, but at the same time we are full of sorrow because we are spending our second Christmas without Kailie. Our family has been broken and Kailie's death affects each one of us differently. Yes we are still a family who loves each other, but each of us is missing a very big part of ourselves. Every single day must be like Christmas for Kailie; she is spending eternity with Jesus. Someday we will join her but for now we have a job to accomplish here on Earth. The day that Kailie died was the worst day of our lives and there is nothing that can change that. She was so special to her brothers, mommy and daddy.
Jaren is really struggling this holiday season. It started the Monday before Thanksgiving. His world was just destroyed the day Kailie died. We remember the day he told us that we lied to him because we said that Kailie wasn't going to die. Jaren and his daddy just finished going through the drive thru at Hardees one morning when he said, "Is Kailie going to die?" John told him that only God knows that but the doctors didn’t think she was going to. Have your children ever asked you if one of their siblings were going to die? Kailie was Jaren's security blanket, she was always there willing to love and accept him for who he was. She was always willing to forgive him regardless of what he had done. She was his main source of comfort, she completely understood his special needs and how important she was to him. Then in an instant, she was gone and his world was shattered. When she first found out that she had HLH she said these exact words "I'm not afraid to die, I just don’t want anyone to be sad". Unfortunately this cannot be avoided by any one of us. He feels so out of place with the rest of the world. He senses that he is different and he doesn't understand why other kids don't accept him as he is. He is very unhappy and angry right now. How in the world do you effectively help him and meet all of his needs? We know he has been thinking about Kailie a great deal. The other night before when we tucked him into bed he told us he wanted to write a song about Kailie, called "My Father's Angel". It almost made us cry. He is expressing his emotions in very different ways from typical children, but he is expressing how he feels the best way he knows how. It is very painful to feel helpless and unable to give your children the specific supports they need.
It is hard to feel up to the task of getting ready for Christmas. Yes, we do it anyway; but it is just very, very hard. We have so many questions for which there are not answers. We know too many families who are feeling the same thing right now. It doesn't matter if your child died 10 years ago or one month ago, the pain of them being gone is enormous.
This Christmas please take the time to enjoy every moment with your families, your children and friends. Don't take a single day for granted. We pray that it never happens, but sometimes cherished memories are all that you are left with and it is important to savor every one of them. Don't take today for granted. Don't expect tomorrow to be the same. Don't go to sleep tonight without telling your family that you love them. If you can repair relationships with those you love, do it at all costs.
When memories are all that you have, they become more precious than gold. For your own benefit, and those you love, do whatever you can to create memories of joy this Christmas season.
Thank you so much for all of your prayers. We cannot begin to express how grateful we are for your faithfulness in praying for us, and other families who have lost children. Regardless of what we don't have in Kailie not being here with us, we know that because Jesus Christ is our Lord and Savior, we will see her again. The best present you can give yourself this Christmas is to give your life to Jesus.
We are all sinners in need of a savior:
For all have sinned and come short of the glory of God. Romans 3:23
Because God loved us, he sent his son:
But God commended his love toward us, in that while we were yet sinners, Christ died for us. Romans 5:8
And made a way for us to spend eternity in Heaven (instead of hell):
The wages of sin is death, but the gift of God is eternal life through Jesus Christ our Lord. Romans 6:23
So all you have to do is:
That if thou shalt confess with thine mouth the Lord Jesus and believe in thine heart that God raised him from the dead, thou shalt be saved. Romans 10:9
That’s all you have to do!
We choose to have joy, and we are so thankful for what God has done for us. Thank you for being so special to us and for being such an important part of our lives. We pray you have a wonderful Christmas celebrating YOUR Savior!
Merry Christmas,
Kailie's Mommy & Daddy 4-ever
Monday, December 12, 2005 2:21 PM CST
It is so very difficult to update this website sometimes. We can't believe that Christmas is almost here. It doesn't seem possible that this is our second Christmas without our precious girl. We miss her so much. She always helped mom put up the Christmas tree. That was their job together. It is now a painful thing to do, but we do it for the boys. It is difficult to go Christmas shopping for only two children instead of three. It is hard to sign Christmas cards and even more difficult to take a family picture to put in them (which we haven't done yet).
However, amidst all of the sadness Christmas brings, there is joy. Christmas is all about God sending his Son, Jesus, so that we might have eternal life. We are thankful that we have Jesus, because Christmas would be very meaningless without Him. We are also very thankful for all of the precious memories we have of our Christmases with Kailie. God was gracious enough to give us thirteen Christmases with her. We are also obviously thankful that we have our boys and each other.
We pray that you and your families have a blessed Christmas. Remember the reason for the season, Jesus’ birth. Jesus came to this earth, lived a sinless life, and died on the cross so that we may have eternal life. It is our hope that if you have not trusted in Jesus as your personal Savior, that you would do that, and celebrate Christmas this year knowing that you have eternal life.
We are all sinners in need of a savior:
For all have sinned and come short of the glory of God. Romans 3:23
Because God loved us, he sent his son:
But God commended his love toward us, in that while we were yet sinners, Christ died for us. Romans 5:8
And made a way for us to spend eternity in Heaven (instead of hell):
The wages of sin is death, but the gift of God is eternal life through Jesus Christ our Lord. Romans 6:23
So all you have to do is:
That if thou shalt confess with thine mouth the Lord Jesus and believe in thine heart that God raised him from the dead, thou shalt be saved. Romans 10:9
That’s all you have to do!
We pray you have a wonderful Christmas celebrating YOUR Savior!
John & Johnelle
PS. Check out the picture page for Christmases past!!
Tuesday, November 8, 2005 8:50 PM CST
Join Kailie's Krew for America's Most Beautiful Bike Ride in Lake Tahoe, June 4, 2006. For more information, go to kares4kailie.com
We are gearing up for Kailie's favorite ride. She accompanied her Team in Training teammates many times to Lake Tahoe to cheer them on as they rode 100 miles around the lake. Now we are taking Kailie's Krew there to ride again to raise money for the Kares 4 Kailie Foundation.
She would be so excited if she were here. We know she knows what we are doing. We can just see the smile on her face. It's the same smile you see at the top of this page, only it's even more beautiful and precious. This picture was taken on Kailie's last trip to Lake Tahoe in June of 2004, right before she got sick again.
We are excited yet sad. She should be with us. She should be following her teammates around the lake as they ride. We should all have her name on our shirts along with all of the other kids we are riding for. Actually, we can. We had a rubber stamp made of her signature. We got it off of one of her teammates shirts and scanned it. You can see it on the picture page along with some other Kailie’s Krew pictures.
We are so grateful for all of the love and support we continue to receive. Thank you for coming here today and checking on us. Don’t forget to sign the guestbook and let us know you were here. It is such an encouragement to us!
Please keep praying for Jessica’s family. Please continue praying for Josie, Chelsea, and many other precious children who are fighting the monster called childhood cancer.
John & Johnelle
Wednesday, October 12, 2005 3:34 PM CDT
Check out the new pictures of "Kailie's Krew" walking in the Friends of Kids walk on Saturday, October 8!!
Thanks to all of you who joined "Kailie's Krew" for the 4th Annual "Walk with a Friend" benefiting Friends of Kids with Cancer. We appreciate all of you who took the time to come out and support us in our endeavor to support a charity that has made such an impact on our lives. They also made an impact on our little girl's life. The following is something she had written in the past about Friends of Kids:
"Friends of Kids With Cancer has helped me throughout treatment in a lot of ways. They helped me focus on the good things, not the bad. They gave me something to look forward to like the Big Shelf, trips to the zoo, and gift certificates! They made the doctor's office a fun place to be when that was the only place I could go. They gave me some good memories to carry with me all throughout my life."
- Kailie Rhines
We are so thankful to everyone who continues to support our family. We are blessed to have you all in our lives. To learn more about Friends of Kids with Cancer, follow the link at the bottom of Kailie's page or go to http://www.friendsofkids.com.
Please continue to pray for Jessica's family. It has been 2 1/2 weeks since they had to say goodbye to her. I am sure for them, it seems like forever one minute and like yesterday the next. Please go to Jess' website, caringbridge.org/mo/jessicajohnson, and leave them a note of encouragement.
John & Johnelle
Thursday, September 24, 2005 11:27 PM CDT
***UPDATE SATURDAY 11:26 PM, SEPTEMBER 24, 2005 *** Please join "Kailie's Krew” as we walk in memory of Kailie at the 4th Annual Friends of Kids with Cancer's "Walk with a Friend." The event is a 5K run or a 1 mile walk. Most of our team will be doing the walk. The date is October 8th and is being held at Westport Plaza. Registration begins at 7:00 am and the walk begins at 8:00. We had a team of about 50 last year. Please help us exceed that number and come out and join us! Check out the picture page for a picture of last year's team.
Earlier today many of you were asked to pray that God would perform a miracle in Jessica's body and she would recover. God saw Jessica fighting and healed her in the easiest way possible for Jessica, He took her to heaven. Around 6:30 PM this evening Jessica peacefully passed away and went to be with Jesus.
Sometimes people will say that a person "lost the battle", but for a Christian death is the ultimate victory. Jessica knew Jesus as her savior and she has been freed from all of the horrible affects that sin has upon this world. Because of God's son, and only His son, we can be thankful that Jess is in paradise with Christ. No child deserves to endure cancer, ever. They didn't do anything to get it and they would never have chosen it. We don't understand why this happens, but we know that God is in control. We didn't understand when Kailie passed away, and the same holds true for Jessica.
Jessica joins many of her friends in heaven. This is obviously not the way any of us would have planned it, but Jessica has joined Kailie, Jordan, Bobby, Jacob, Austin, Andy, Alexandria, Harrison, Anna, Randi and others to an eternity filled with joy and will never experience sadness or pain again.
Revelation 21:4-5 says
4 And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.
5 And he that sat upon the throne said, Behold, I make all things new. And he said unto me, Write: for these words are true and faithful.
Jessica has been made brand new again. We love you very much and you will live in our hearts forever. Thank you for making a difference in the lives of so many people.
This isn't goodbye, just so long for now.
We love you forever Jess!
Go to the "view photos" link and see two beautiful girls!
September is Childhood Cancer Awareness Month!!
All proceeds from the walk go to Friends of Kids with Cancer. You can visit their website at http://www.friendsofkids.com to get more information. You can also register online if you would like. Just remember to tell them you are on the "Kailie's Krew" team. If you would like more information, you can also email us at
kares4kailie@charter.net.
There is another opportunity to show your support for cancer awareness and also support some kids that are very special to us. September 30th is the Leukemia and Lymphoma Society's "Light the Night" walk. This is a walk we did while Kailie was still alive. We had a team for three years in a row. This is not something we are ready to do quite yet. But there are two very special young adults (who we have known since they were kids J) who have a team. They are calling themselves the "J-Walkers" in memory of Jessica Johnson and in honor of Jay Thomas.
Kailie wrote the following speech when she was asked to speak at the Team Captain Party for the September, 2003 "Light The Night” walk. This was posted on the website two years ago when she wrote it, but we thought it would be a good idea to send it out again. So, here it is:
Hello, my name is Kailie Rhines. I have been going through treatment for Acute Lymphoblastic Leukemia for almost three years now. I was diagnosed with ALL on November 2, of 2000.
The day I was diagnosed was like a dream. I remember is so plainly. The night before I had been in a cheerleading competition. We had won first place; I was so excited. For the last five days I had noticed some severe bruising. It looked like I'd fallen down the stairs. The day after the competition, I went to the doctor. I wasn't at all worried. I thought there would surely be a simple explanation. But no. My doctor said to go to the lab next door so they could test my blood. I was like, well, okay, whatever. I had never had my blood drawn before, so I didn't know if it would hurt or not. When they drew my blood, I watched that needle go in. I was thinking, COOL!!! Cool, as in, that didn't hurt! The doctor said to go home, and that they would call immediately with my blood count results.
A couple hours later, I was playing in my room when Mom came up and said, Kailie, we have to pack you some stuff to do, while you go to the hospital. I was like, NO! Why do I have to go? Mom told me the doctors wanted to check me out. We thought I would only be there a couple of days, but a couple of days turned into ten days. Well, anyway, we went to the hospital and were met by a really nice doctor. His name was Dr. Rob Hanson. I really liked him, he was really nice. I got to thinking; this might not be all that bad. But he said that I would have surgery to have a port put in, and I would have my first round of chemotherapy. I didn't know what that was, but it didn't sound good as soon as Dr. Rob said it might make me a little sick. I had my port put in, and my first chemo. I was OK for a day or so. Then I started having severe pain, where I couldn't even move my jaw to talk. That's when they put me on pain medication. That only gave me reason to stay longer. I don't remember a whole lot after that, but I do remember Mom went out to buy me a gel pen and a black notebook so I could write down the things I wanted to say, since I couldn't say them without hurting.
A few days before I got to go home, I was told that I would lose my hair. I did, and I wasn't happy. But I did like the fact that I had all these cool hats. The next six months were pretty bad. I felt horrible all the time. I couldn't go anywhere. I pretty much slept all the time. I hadn't seen my friends in six months, and I didn't want to. I felt sick. The January after I was diagnosed me and my family started participating in Team In Training. I didn't get it at first, but when I did, I thought, oh, my gosh. I wouldn't be here if it weren't for them. All the money you have raised has helped so much. That money is priceless. That all goes towards research. About 70 percent of the people, who are diagnosed with my kind of Leukemia, get better, because of you. Light the Night isn't only fun, but in the process you are saving lives. Team In Training, too. You don't have to be Superman to be a hero. My heroes are the people who have raised money, to help people like me get better. My heroes are my doctors, my family. I couldn't have done this without them. I wouldn't be here if it weren't for you. When some days I feel like I can't go anymore, I pray, and remember this Bible verse from Psalm 27:1. The Lord is my light, and my salvation, whom shall I fear? The Lord is the strength of my life, of whom shall I be afraid. I have gotten through Leukemia knowing, what God did for me. He sent his only Son to die on the cross, to pay the penalty for my sin. Going through Leukemia can't possibly be as bad as that. And I am not afraid to go through treatment for cancer. I know that whatever happens to me, it's all part of God's plan for my life. So, I want to thank each and every one of you, who has helped raise money for the Leukemia and Lymphoma Society. You are a blessing. I am sure when I say that; I speak for every cancer patient. I wouldn't be winning this fight, without your help.
We miss you so much Kailie and we can't wait until we get to see you again.
We love you pumkinseed,
Mommy & Daddy
Monday, September 19, 2005 11:30 AM CDT
Kailie wrote this when she was asked to speak at the Team Captain Party for the September, 2003 Light The Night walk. This was posted on the website two years ago when she wrote it, but we thought it would be a good idea to send it out again. So, here it is:
Hello, my name is Kailie Rhines. I have been going through treatment for Acute Lymphoblastic Leukemia for almost three years now. I was diagnosed with ALL on November 2, of 2000.
The day I was diagnosed was like a dream. I remember is so plainly. The night before I had been in a cheerleading competition. We had won first place; I was so excited. For the last five days I had noticed some severe bruising. It looked like I’d fallen down the stairs. The day after the competition, I went to the doctor. I wasn’t at all worried. I thought there would surely be a simple explanation. But no. My doctor said to go to the lab next door so they could test my blood. I was like, well, okay, whatever. I had never had my blood drawn before, so I didn’t know if it would hurt or not. When they drew my blood, I watched that needle go in. I was thinking, COOL!!! Cool, as in, that didn’t hurt! The doctor said to go home, and that they would call immediately with my blood count results.
A couple hours later, I was playing in my room when Mom came up and said, Kailie, we have to pack you some stuff to do, while you go to the hospital. I was like, NO! Why do I have to go? Mom told me the doctors wanted to check me out. We thought I would only be there a couple of days, but a couple of days turned into ten days. Well, anyway, we went to the hospital and were met by a really nice doctor. His name was Dr. Rob Hanson. I really liked him, he was really nice. I got to thinking; this might not be all that bad. But he said that I would have surgery to have a port put in, and I would have my first round of chemotherapy. I didn’t know what that was, but it didn’t sound good as soon as Dr. Rob said it might make me a little sick. I had my port put in, and my first chemo. I was OK for a day or so. Then I started having severe pain, where I couldn’t even move my jaw to talk. That’s when they put me on pain medication. That only gave me reason to stay longer. I don’t remember a whole lot after that, but I do remember Mom went out to buy me a gel pen and a black notebook so I could write down the things I wanted to say, since I couldn’t say them without hurting.
A few days before I got to go home, I was told that I would lose my hair. I did, and I wasn’t happy. But I did like the fact that I had all these cool hats. The next six months were pretty bad. I felt horrible all the time. I couldn’t go anywhere. I pretty much slept all the time. I hadn’t seen my friends in six months, and I didn’t want to. I felt sick. The January after I was diagnosed me and my family started participating in Team In Training. I didn’t get it at first, but when I did, I thought, oh, my gosh. I wouldn’t be here if it weren’t for them. All the money you have raised has helped so much. That money is priceless. That all goes towards research. About 70 percent of the people, who are diagnosed with my kind of Leukemia, get better, because of you. Light the Night isn’t only fun, but in the process you are saving lives. Team In Training, too. You don’t have to be Superman to be a hero. My heroes are the people who have raised money, to help people like me get better. My heroes are my doctors, my family. I couldn’t have done this without them. I wouldn’t be here if it weren’t for you. When some days I feel like I can’t go anymore, I pray, and remember this Bible verse from Psalm 27:1. The Lord is my light, and my salvation, whom shall I fear? The Lord is the strength of my life, of whom shall I be afraid. I have gotten through Leukemia knowing, what God did for me. He sent his only Son to die on the cross, to pay the penalty for my sin. Going through Leukemia can’t possibly be as bad as that. And I am not afraid to go through treatment for cancer. I know that whatever happens to me, it’s all part of God’s plan for my life. So, I want to thank each and every one of you, who has helped raise money for the Leukemia and Lymphoma Society. You are a blessing. I am sure when I say that; I speak for every cancer patient. I wouldn’t be winning this fight, without your help.
It has been 13 very long months since Kailie passed away and it still seems so unreal and impossible. Losing her hurts very much and the walk was always a special time for her, and us. We are not quite ready to take part in the Light The Night walk. We don't want to see the luminary in honor and memory of our little girl. However there is another team walking if you are interested in joining them.
Please look on Jessica's website http://www.caringbridge.mo/jessicajohnson for more details. Jessica
desperately needs your prayers. She is still in the PICU at Children's battling a severe case of GVHD.
We miss you so much Kailie and we can't
wait until we get to see you again.
We love you pumkinseed,
Mommy & Daddy
Friday, September 2, 2005 4:11 PM CDT
Jessica Johnson urgently needs your prayers and support. The link to her website is at the bottom of this page.
Well, the one year mark is past.
Stop and think about it. It has been one year since any of us last saw Kailie. Although the memory of her precious smile and loving eyes is as fresh as possible, we haven't been in her presence for one year.
We never thought, imagined, dreamed, fathomed, envisioned, expected, suspected, foresaw or anticipated that Kailie would die. Never, not once until that horrible moment on Friday, August 13, 2004 when the EEG revealed that the Kailie we knew would never be coming back did we even think it was a possibility that Kailie wouldn’t survive.
The doctors had talked to us that Friday and told us that we should let people say goodbye to Kailie. Do you know how hard that was? The machines we depended on to help Kailie get better were now being used to keep her alive. The decision to discontinue therapy was impossible to make as parents. We never had to make that decision because we had said all along that Kailie would tell us; that she would let us know when she was finished, when she wanted to stop, when she was ready to go be with her tender, loving Savior, Jesus Christ.
Her body did exactly that and we agreed with her decision. We chose to discontinue all forms of therapy, except pain control, and extubate Kailie and let her be free to leave this world behind and join her Heavenly Father in heaven.
Dr. Bob, Dr. Rob and Jill took care of Kailie as if she was one of their own children. We wanted Dr. Bob to be the one who extubated Kailie. We wanted him and Jill to be with us when that took place. We fully expected Kailie to quickly and peacefully pass away. But she had different plans. Dr. Bob waited for an hour or so after Kailie was extubated before he made sure we were okay, and he left Kailie’s room for the last time. After Dr. Bob left we only allowed Ian, Jaren, doctors and nurses to come into Kailie’s room.
God gave us one of the greatest gifts possible by letting us spend her last 15 hours with us in complete freedom from all of the machines, pumps, tubes, lines, monitors and noises that had accompanied us for the last two months. As we snuggled with Kailie on her bed we held her hand and softly touched her cheeks and face while we sang her favorite praise songs to her. We told her how much we loved her, how thankful we were for her, and told her how much we would miss her not being with us. We cried so many tears throughout that night as we recalled the many happy times that the five of us experienced together. We talked about Kailie playing in the snow as a little toddler. We recalled how Kailie took care of Jaren from the time he was born. We remembered how much she admired her big brother Ian and how she loved him beyond what this world could understand. We thought about Jaren and how his life revolved around Kailie. She was his world, his sun, his light, his everything. We treasured each moment we had left with Kailie. It’s very painful to go back in time and remember the last time we held her in our arms. We realized that our time with her would soon be over and we would only have eternity to look forward to when we could see her again.
The day she went to be with Jesus was the worst day of our lives, but it was the greatest day possible for Kailie. She was forever free from all the sin, temptation, heartaches, problems, fears, sickness and horrible things this world contains. She was now beginning eternity with her Lord and Savior Jesus Christ. Praise The Lord! Kailie is now with Jesus. She finished everything God sent her here to do, she completed the race, she won the fight and now it was time for her to claim her prize.
We miss you sweet girl. We miss you so very much Kailie.
However, our jobs on earth are not finished. We are here to teach our boys about God’s grace, forgiveness, restoration, complete love and every other aspect of God that is described in the Bible. The two of us are also here to support one another and love the other as husband and wife, mommy & daddy. We have so much left to accomplish for Jesus and in some ways it is only just beginning.
You know that Kailie continues to live on in the hearts of hundreds of people, some who never had the privilege of meeting this precious little girl. God has given us her testimony to share with others; he has allowed us to see people come to know Jesus as their Savior after hearing about Kailie's faith in Jesus as she fought the greatest battle ever imaginable. She won!! And others can win that same battle. They can be victorious over sin and death by accepting Jesus as their Lord and Savior. We are here to share the gospel of Jesus Christ to as many people as possible.
One time Kailie was in severe pain and was ready to give up, but instead she said the following to us, "If one person comes to accept Jesus as their Savior because of my going through treatment for leukemia, than it is worth it all." Wow!
So far 26 people, that we know of for sure, have come to know Jesus as their Savior through Kailie’s testimony. That doesn’t count the 600 people who were at her celebration service. That doesn’t count the thousands of people who have heard about Kailie’s story. Kailie was a missionary while she was here on Earth. And God has given us the privilege of continuing to share Kailie with other people thereby giving us a chance to share God’s love with them.
In closing we wanted to include the following poem that Jaren had to write for school. When we were finished reading it he asked us, "Did it touch your heart?" We'll let you answer that question for yourselves.
I AM POEM
JAREN RHINES
I am funny, caring kid who likes my sister.
I wonder about the world we live in.
I hear thunder before it arrives.
I see my sisters soul right in front of me.
I want to be a mechanic when I grow up.
I am funny, caring kid who likes my sister.
I pretend I am falling in the air with my sister.
I feel my sister touching my hand.
I touch my sister’s hand.
I worry when my sister had cancer.
I cry when my sister passed away.
I am funny, caring kid who likes my sister.
I understand that my sister is not here.
I say a lot of things about my sister.
I dream about my sister and me as teens.
I try to not cry about my sister.
I hope I get to see her again.
I am funny, caring kid who likes my sister.
Please continue praying for Jessica. She urgently needs your prayers. Visit Jess' website and let her know that you love her and are praying for her complete healing.
Thursday, September 1, 2005 11:17 AM CDT
Update 5:09 PM CST
Jessica is still very sick. She is on a ventilator, but is not receiving vecuronium (one of the meds in a group of drugs referred to as Neuromuscular Blocking Agents. She is receiving Ativan to calmly sedate her. The ventilator is providing only minimal assistance, which is good news because Jessica's lungs were having problems.
She does have acidosis, her blood pH is not normal; her billirubin is 15 which is obviously not normal.
They put an NG tube into her stomach and have drained approximately 750cc of accumulated blood from her GI tract.
The prayers right now are:
-- Her overall condition to improve
-- Toxic levels of medications in her liver to fall
-- Kidney function to improve
-- No blood clots in liver or spleen
-- No tear in her peritoneal cavity
-- Would not develop a perforated bowel
-- Wisdom for doctors
-- Strength for her mom Vicky
-- Jessica's complete recovery
Thank you once again.
Thursday, September 1, 2005 11:17 AM CDT
Another precious young lady is facing a very difficult battle as her body struggles to get well. Jessica Johnson is back in the PICU at Children's and urgently needs everyone’s prayers. She has battled through so many omplications since her diagnosis and stem cell transplant. She is on a ventilator and deaing with multiple complications at this point. She has a severe fungal infection and the doctors are doing everything they can to help her recover. Please, please pray for Jessica's healing.
It hurts so bad to think of another family dealing with the affects of cancer. Jessica had her stem cell transplant on Thursday, March 3, 2005. They found out that Jessica had developed a secondary cancer (AML) on Monday, December 20, 2004. Chemotherapy drugs are a lifesaver and killer all at the same time. One of the drugs Jessica received to treat her initial cancer, etoposide or VP-16, caused her to relapse.
We will update the site again when we have additional news. Visit
for further information and to send her a note of encouragement.
Thank you very much,
Kailie's mommy & daddy forever
John & Johnelle
Monday, August 22, 2005 3:54 PM CDT
How long is ONE year? By the way...if you ever hear someone say that ALL is the "good" kind of leukemia, tell them to live the life of one of these children and then try to utter those words. We as a society are so fooled by statistics and numbers that we lose sight of the reality that cancer brings to the lives of so many families. A nurse, above all people, said the following to us when Kailie was diagnosed. "At least Kailie has a curable form of leukemia. If there is a good one to get, ALL is the one. After all, there is an eighty percent cure rate Sunday was the one year anniversary of Kailie’s celebration service. It seems like Kailie passed away just yesterday, but it feels like forever since we last saw and spoke with her. So many things in our lives have changed since Kailie died. There are so many things we desperately miss. Most of all we miss our family being together. We miss not being able to create new memories with the five of us. We miss the completeness of our family. We miss the things we would do as a family. We are sad that Jaren has to grow up without a big sister there to take care of him. We are sad that Jaren has lost his very best friend in the whole wide world. We will never see our precious Kailie grow up to be the pediatric oncology nurse she dreamed to be, nor will we ever attend her wedding or have the chance to hold and nurture her own children. There are just too many things that will never happen. Unfortunately, our sense of loss will continue as time goes on. Happy moments, praise God We miss you so much Kailie and we can’t wait until we get to see you again. You will live in our hearts 4ever. Word Of God Speak
1 Orbit around the sun
4 Seasons
13 Full Moons
12 Months
52 Weeks
365 Days
8,760 Hours
525,600 Seconds
The past year has been a very surreal one for us. Merriam-Webster dictionary
defines surreal as follows: having the intense irrational reality of a dream.
Is there any better definition that that?
Sometimes it is hard to think of which words to use when we are updating
Kailie’s website. There are so many things we want to say and could say. There are many different words available to express our feelings. However, we never have a difficult time expressing our thanks to Jesus for what he has given us. We also don’t have a problem thanking so many people for their prayers and
support. Jesus gave us thirteen wonderful years with Kailie. We were a complete family for such a long time. When Kailie was sick we all stuck together and were there for one another. When Kailie relapsed we were determined to fight as one to help Kailie win the biggest battle of her young life.
We were talking over the weekend about the day Kailie was first diagnosed with ALL, and we couldn’t believe how brave she was.
We never told Kailie that. It would have made her very mad to hear somebody say that when they have no idea what it feels like to lose one of your friends to a "curable" cancer. Kailie’s friends were not a statistic. They were precious children who mattered a great deal and made a difference in the lives of countless others.
Nearly 12,500 children are diagnosed with cancer each year. Roughly 2,500 children die each year from cancer. Cancer is the No. 1 killer among children. Each of those wonderful children has a name, they represent families, they are a dream come true but one that will never be fully realized, they are precious, brave, strong, loved and missed. However, they are not a statistic! Please never make the mistake of saying that someone has a good kind of cancer or one that it is very treatable. Kailie's cancer was treatable, until HLH came along and changed all of that forever.
Each memory of Kailie isn’t as painful as it once was, but the pain of her not being with us is ever present and fresh.
Difficult moments, seek God
Quiet moments, worship God
Painful moments, trust God
Every moment, thank God
We Love you to the moon and back infinity times,
Mommy, Daddy, Ian, Jaren, Liza & Mandy
by: Mercy Me
I'm finding myself at a loss for words
And the funny thing is it's okay
The last thing I need is to be heard
But to hear what You would say
[CHORUS]
Word of God speak
Would You pour down like rain
Washing my eyes to see
Your majesty
To be still and know
That You're in this place
Please let me stay and rest
In Your holiness
Word of God speak
I'm finding myself in the midst of You
Beyond the music, beyond the noise
All that I need is to be with You
And in the quiet hear Your voice
[REPEAT CHORUS 2x]
I'm finding myself at a loss for words
And the funny thing is it's okay
Thank you for your continued prayers and support. We love all of you very much and cannot begin to express our gratitude to Jesus for you.
John & Johnelle (Kailie's mommy & daddy 4ever)
Monday, August 15, 2005 9:59 PM CDT
Even though we grieve, we can still have peace.
Phi 4:7 And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.
Col 3:15 And let the peace of God rule in your hearts, to the which also ye are called in one body; and be ye thankful.
God’s grace is quite able to sustain us as we continue to care for the boys, and miss Kailie deeply.
2Co 12:9 And he said unto me, My grace is sufficient for thee: for my
strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.
Thank you God for giving us your word, it is pure, true and holy.
Ps 12:6 The words of the LORD are pure words: as silver tried in a furnace of earth, purified seven times.
2Sa 22:31 As for God, his way is perfect; the word of the LORD is tried: he is a buckler to all them that trust in him.
Pr 30:5 Every word of God is pure: he is a shield unto them that put their trust in him.
:-)We Miss You Sweet Girl, See You Soon(-: