History

Thursday, August 21, 2008 10:52 AM CDT

Good Morning Friends!

This morning we celebrated! Joshua began his first day of 4th grade and Bethany began her first day of 8th grade. What an incredible time I had with them driving them to school. Just like every first day of school since Neuroblastoma, I moved my rear view mirror so I had Joshua in my sight all the way to school! As we talked, one word and one word only camped in my mind! That word was "Thank you"!

Both Bethany and Joshua were excited to go to school today. They were ready and had such beautiful spirits. I got a chance to share with both of them the things I respect about them and the vast potential I see for the coming year. What a blessing!

So, from our house to yours...Happy back to school time! May God bless your family in amazing ways!

Bethany & Joshua's grateful mom...Janene

Wednesday, June 25, 2008 7:22 PM CDT

Hi there!

It's been a long time and I wanted to write and say that Joshua continues to do well and is enjoying his summer.

The end of school brought good times and sad times for Joshua. He was excited to start summer, but so sad to leave his teacher and his friends. He got over it quickly and has been thriving this summer. He has been playing basketball, swimming and even learning to ride his bike. Some of you remember that Joshua was in the hospital while most of his friends were learning to ride their bikes. He missed out on those types of normal things during those years and never has really had the desire to try in the past few years. This summer though...he is quite determined and will be riding soon. I love watching him struggle with that in particular. It is such a normal thing to struggle with and I am so thankful he is here to learn how to ride his bike.

During the first weekend of June, our family coordinated Topeka's first Alex's Lemonade Stand. We worked with the Kansas City area network of stands and together raised over $125,000 for childhood cancer research etc. I was so proud of Joshua and his friends that weekend. Joshua took the responsibility very seriously and worked very hard. We also had the pleasure of meeting and working with several other Topeka families who have been touched by childhood cancer. It was wonderful to meet them and hear their stories as we worked towards a great cause. Craig and I appreciated the opportunity to give back to the community as a family. We have received so much since March of 2003, and we are committed to begin paying that forward through the opportunities God brings into our lives.

About a week ago, we received Joshua's SAT test scores in the mail. It was facinating to see the improvement one year can bring. Joshua did a great job. His scores reflect heights in Joshua we didn't dare to dream. Craig was very proud of his math score and believes Joshua may just end up being a number guy.

It is such a joy to be looking towards the future. Neuroblastoma is fading into the background while life is coming to the surface. I'm reminded often of the importance of living each minute of every day on purpose and for God's glory. My favorite author wrote a devotional that I read lately. She was talking about the time in the Bible when Jesus sent his disciples by boat across the sea. The winds came and the disciples weren't making it on their own. Jesus walked on the water and came to save them. The winds didn't calm until Jesus stepped into the boat. The order of events spoke significantly to me. If Jesus would have stopped the storm from the beach, the disciples would not have seen His glory displayed. It took a storm for them to see His majesty. I realized again that instead of praying for the storms in my life to pass, I need to pray, in the midst of the storm, that I would encounter the living God in the way He desires as He longs to show me His heart and His eternal purposes. That is the only way for Him to accomplish His purpose in the midst of the many storms that I experience.

I truly hope that you are having a blessed summer. I pray you recognize the blessings God rains down on you and that His sweet mercies astound you as you live this summer day by day. Thanks for stopping by and checking in on my Joshua. I appreciate you all so very much!

With Hope
Janene

Friday, March 14, 2008 5:02 PM CDT

Happy Spring Break!

I just returned home from picking up Bethany and Joshua from school. Bethany was overjoyed about being on spring break and Joshua was sobbing when I got to school. As it turns out, one of his friends...a little girls named Melissa, is moving out of state. Today was her last day, and Joshua's heart was totally and completely broken. We've spent quite a bit of time talking it through, and will hopefully be happy for Spring Break soon:)

Today is a special day and a remarkable anniversary for Joshua. 5 years ago today, we entered the world of Childhood cancer. I thought I'd take a minute to share the memories I have that are so vivid about March 14th, 2003.

I remember waking up on the 14th after an almost sleepless night beside Joshua who was in more pain than I had ever seen.

I remember taking Craig with me to make Dr. Vansickle do something to help Joshua cause I knew I couldn't do another night like the last.

I remember Dr. Vansickle pushing hard and finally finding a "mass".

I remember the sonogram technician measuring all of Joshua's organs and labeling them...then she measured something and didn't label it.

I remember her telling us to stay close to the phone cause she knew our doctor would be calling soon.

I remember the phone call when Dr. V. sent us to KU Med and said his worst fear was Lymphoma.

I remember the phone calls and paralyzing fear, yet a strange peace and a surreal sheltering from the facts that should of been evident.

I remember driving on I-70 and seeing the sign to KU Med Center on the first of many visits to come.

I remember Joshua's pain while we were in the admitting office waiting.

I remember going upstairs to the 5th floor and meeting Jeremy and his parents. Jeremy was our first roomate and died earlier this year.

I remember meeting Kris...the best nurse in the world.

I remember the wagon ride down to xray with Kris and Joshua. She saw the fear in my eyes and assured me that they saw a lot of kids make it.

I remember Dr. Deb telling us it was either Mono or cancer.

I remember the long walk out to the "bad news room" and her telling us it was cancer...probably lymphoma.

I remember peace.

I remember Randy, Lynda, Nette, Grandpa John, Grandma Myrle, all being there when we got back from the bad news room.

I remember saying "it's cancer".

I remember Bethany's question on the phone asking me "Is Joshua going to die?"

I remember being grateful for Morphine...very grateful for morphine. It took his pain away. It took a lot, but it did take his pain away.

I remember seeing Jeremy's central line sticking out from his chest...wondering.

I remember the bathroom across the hall from Joshua's room. Whenever I couldn't stop the tears, I ran for the bathroom and cried until my tears were gone.

I remember sleeping in the hospital bed with Joshua that night while Craig had the chair bed.

I'll never forget our night nurse Penny coming in at 3:00 AM or so and turning on all the lights and telling us that Joshua had at least a 70 percent chance of surviving. Little did we know that in 1 week, we would receive a different diagnosis with flipped odds, and a 30 percent chance of survival would be our reality.

I remember telling Craig that I could not handle a 30 percent chance of watching Joshua die.

I remember more tears across the hall in the bathroom in the middle of the night and strangely, I remember peace...miraculous and precious peace.

I slept, Joshua slept and Craig slept. Not very well, but we did sleep. Looking back, that's the biggest miracle of the hundreds and perhaps thousands God did for us during Joshua's battle with Neuroblastoma.

5 years ago today, our lives changed forever. We faced our biggest fears and God triumphed over our fears with His peace...His HOPE and His strength.

Now, 5 years later. Joshua is still here. He continues to be cancer free and his life is a treasure we can't take for granted.

God has done incredibly more in the last 5 years than we could ever ask for or imagine. On this, Joshua's 5 year survival anniversary, the only thing we can say is thank you.

Happy Anniversary Sweet Boy!
Love Mom!

Tuesday, December 4, 2007 8:22 AM CST

Life is...

Life is an opportunity, benefit from it.
Life is beauty, admire it.
Life is bliss, taste it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfil it.
Life is a sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.
Life is life, fight for it.

Mother Teresa

_______________________________________

Good morning Wonderful Friends!

Happy December and Merry Christmas. The picture is from last night. We had the privilege of attending Joshua and Bethany's school Christmas program once more. They both did a great job and I was mindful of another year, another Christmas, another program for which to be thankful. So many of the families we have met in the past almost 5 years don't have those opportunities anymore.

We are decorated and excited for Christmas around here. Joshua has been really focussed on figuring out what he is getting us for Christmas. He has been plotting and planning for a while now...very sweet. Last night as we were driving in the car, we were admiring some Christmas lights as we drove along. He piped up and said... "Do you know why we put up Christmas lights each year?" I said "Why Joshua". He then said "To remind us that we are no longer living in darkness". I thought for a minute and then decided I had never heard a better reason to decorate with lights for Christmas. He seems to be getting it, and I love it when he reminds me of what matters.

Many years ago, God sent His son to earth as a baby. That baby grew up and became our light and our hope. Only because of that first Christmas so long ago, we are no longer living in darkness. We have been given the greatest gift of all...a relationship with the one and only God of the Universe, and therefore eternity in Heaven with Him as well. When the days here on earth get dark with trials, we must focus on the light of eternity which is ours because of Christmas!

Merry Christmas... and may His LIGHT give you true hope as you celebrate His birth this year!

Craig, Janene, Bethany & Joshua Freerksen

Tuesday, November 20, 2007 10:00 PM CST

Happy Thanksgiving!

As I was putting Joshua in bed tonight, I asked him what he was most thankful for this Thanksgiving. I expected him to say something like Sonic or Mario or his Wii. Once more, he surprised his mom. Without batting an eye, he responded “Mom, I’m thankful for the behavior of Christ! “What do you mean Joshua?” I said. “ I mean, the Lord Jesus Christ is our only hope. I am grateful for that." He followed that statement with an explanation of all God does for us.

I'm thankful for the behavior of Christ as well, but tonight, I'm grateful for a little soul just down that hallway that always reminds me what I should be thankful for and why.

I'm also grateful that Joshua continues to do very well physically. He hasn't experienced anything medical in quite a while and has been feeling great. He is doing a great job in 3rd grade and we are very proud of him. Just tonight, he realized that he had 5 more chapter books to read to reach his goal of 11 for the month. He then proceeded to line up his Magic Treehouse chapter books and read like crazy. Just a few minutes ago, he yelled from his bed and told me he had finished the 5th one. When he puts his mind to something, he can be quite determined. I'm sure thankful to be his mom!

We hope you have a wonderful Thanksgiving and that you are ever so mindful of the many blessings God has given! Here in Topeka, we'll be counting ours...and at the top of our list...you guessed it...the behavior of Christ!

Thankful,
Janene

Monday, October 8, 2007 0:24 AM CDT

Hello Wonderful Friends!

This weekend, I had the privilege of celebrating my son's 9th birthday. I used to take these celebrations for granted, but this weekend, I found myself only grateful. We had such a great time on Saturday, as we celebrated a day early. Joshua had the time of his life.

Now, it's officially October 8. Today is Joshua's transplant anniversary. 4 years ago today, Joshua received his stem cells back in the middle of his stem cell transplant. We spent most of October in the hospital and he was one sick kid. How grateful we are to be 4 years event free. For now, Joshua is a survivor and we praise God for all He has done in Joshua and for our family.

Joshua continues to do well. He is feeling great physically and is doing well in school. He is simply a joy.

Thanks for taking the time to stop by and check in with us. We appreciate all of you who care so faithfully!

With Hope,
Joshua's mom...Janene

Friday, September 21, 2007 8:17 PM CDT

Happy Weekend to you all!

Joshua's scans this week went well. His CT and MIBG were basicly clean, but for sure unchanged which is good news...especially in light of his recent bout of neck pain. Joshua enjoyed going to the hospital this week and was very pleased to miss a few days of school:)

We are settling in for a relaxing weekend and a much needed break. For now, this Friday night finds us 4 Freerksen's blessed.

With Hope,
Janene

Friday, September 14, 2007 8:54 AM CDT

Good morning Wonderful friends,

I just dropped Joshua and Bethany off at school and am thankful for the coming weekend. Joshua has his first social studies test today and has been studying all week for it. I'm anxious to hear his report when he comes home. He takes his work at school so seriously.

Last week we had a bit of a scare with Joshua. He had neck pain and headaches that lasted 5 days. As you may know by now, pain of any kind is scarry, but pain that lasts 5 days means means serious business. We quickly had him seen in the clinic and had blood work and urine levels done. His doctor ended up feeling like he injured his neck somehow???

I'm happy to report that he is feeling better now. He has periodic neck pain, but it is diminishing.

We do have a series of scans set for next week that were previously scheduled. We are really hoping for "clear" scans which will give our doctor some encouragement to be OK with us not scanning anymore. For a long time, Joshua's scans have had questions about them. He just never gets an all clear.

So, we continue on. Hopefully these scans will be the last ones we need to endure. Regardless, we have a weekend coming up and my Joshua is so excited. He has a friend names "Joshua" who is new in his class. They are going to play over here tonight. So, we will enjoy our weekend together and I hope you enjoy yours.

Count your blessings and don't forget to hug the ones you love and listen to them. Life is too short not to.

Janene

Friday, August 24, 2007 12:58 AM CDT

Hello Wonderful Friends,

Happy Friday!
This week marked the beginning of 3rd grade for Joshua. He started school on Tuesday and has done well. In typical "Joshua" style, he has been a little nervous, but has been happy about his days. His teacher is Mrs. Duncan and we are all excited about the new opportunities this year will hold.

Our hearts are full of gratitude that Joshua is still here with us...starting 3rd grade. So many we know and love don't and will not have that privilege with their beloved child. The only response that seems appropriate to us is appreciating today and living today with thanksgiving. And for today, that's enough!

With Hope and so much gratitude,
Janene...(the ever so proud mom of a 3rd grader and 7th grader)

Saturday, August 4, 2007 8:20 AM CDT

Hello and Happy Weekend!

We are home from a wonderful short vacation to Dallas/Ft. Worth. Craig attended an excellent "Next Level" training and we together went to 6 flags. Bethany loved the roller coasters and Joshua loved the water rides. The best part of the trip was following the ride "aqua man". We were all rather soaked...except me cause Craig had protected me from the majority of the water:) Anyways, you have to walk over a bridge to exit the ride and if you choose to stay on the bridge they let you watch the next boat come down the big drop off and under the bridge. Everyone on the bridge at that time gets completely drenched with a tidlewave of water.

Both Bethany and Joshua stayed on the bridge and we watched from the safety of the fence. As the wave washed over them, I saw them explode into joy uncontained. They were both laughing and so completely overjoyed that I just had to file that memory away to save forever. It was one of the most beautiful things I have ever seen in my life.

The kids and I also had a wonderful trip into downtown Dallas to the Dallas Aquarium on Monday when Craig was in his training. We all really enjoyed our time there and loved to see the heart of Dallas. For those who know and understand my fear of snakes, I took a picture of Bethany and Joshua beside 2 - 8 foot Anacondas. Before cancer, I would have never done that. It's amazing how your fears change after dealing with Neuroblastoma.

We have about 2 more weeks of summer before school. I'm dreading the end of these glorious days, yet looking forward to all the new year will bring. Thanks for taking the time to stop by and check in on Joshua. He is doing exceedingly well...and for that we thank God!

Enjoy the rest of your summer cause you can bet we intend to!

With Hope,
Janene

Thursday, July 19, 2007 9:27 PM CDT

Hello Wonderful Friends,

Well I hope each of you are having an amazing summer! I'm happy to report that Joshua continues to do well and is enjoying his summer quite nicely.

We had an MRI several weeks back after Joshua's doctor gave us a scare, but everything turned out quite positively. Our scan plan at this point is to finish our 4 year scans in October and then hopefully stop scanning. We are all very ready to move on and hope Joshua's doctor will be ready for that as well in October.

Joshua is swimming and reading and playing video games as much as possible these days. In between, we're memorizing our multiplication table and working on summer work that Mrs. Walker sent home with each of the 2nd graders.

In a few weeks, we are all going with Craig to Texas as he goes to a training in Dallas. We are planning to visit Six Flags after he is finished and the kids are looking forward to that.

Tomorrow, Joshua is going with Grandma Della to see Bibleman live in Wichita. He has been a Bibleman fan since he was diagnosed with NB at the age of 4. He used to take his cape and sword and mask with him to the hospital and all the nurses would never understand which superhero he was trying to be. I remember having to go back and look for Bibleman Prince of Pride after leaving it at KU Medical Center after one visit. In those days, we just never messed with Joshua's favorite videos. It simply had to accompany him everywhere. I think Aunt Nette ended up finding it for us and bringing it back to Joshua.

Joshua and Bethany and I got to watch our little friend Sadie on Wednesday for the afternoon and evening. Joshua was so wonderful with her. Early on, he came to me perplexed and said "I just wish I could make her comfortable!" He just continues to astound me by his heart for those around him. Sadie wasn't crying or upset, but still Joshua's heart cried out to make her as comfortable as possible. Later on he performed a circus for her with juggling and all and I watched with amazement. He continues to teach me to put others first. He gets such joy from making those around him happy.

Well, that's the news from our home to yours! Thanks so much for taking the time to stop by and check in on Joshua.

With love and gratitude,
Joshua's mom...Janene

PS Our friend Nathan isn't doing well at all! He is currently receiving Hospice care and is struggling daily with pain control as his disease takes over. We spent quite a bit of time in NYC together when the boys were receiving 3F8's together. The Gentry's are a very special family to us. We would greatly appreciate your prayers on their behalf as they fight through these most difficult days. His web page link is at the bottom of the page!

Wednesday, May 30, 2007 11:14 PM CDT

Hello Wonderful Friends!

Happy Summer to each of you!
Our family is still celebrating. We have been through with school now for 1 week and it is especially sweet this year! Relaxing has been the key word lately as we are in recovery mode from an extremely busy school year!

I'm happy to report that Joshua is doing well. He had blood work and urine tests done several weeks ago which indicated all is well. We are meeting with Joshua's doctor in June to discuss the discontinuation of scanning on a regular basis. So, we are truly blessed...poised to enjoy a wonderful summer...free from medical worries and fears.

Join us in praising our wonderful God who has done abundantly more in our lives then we could ask for or imagine.

To Him be the glory!
Janene for all 4 of us:)

Saturday, April 14, 2007 8:41 PM CDT

Hello Wonderful Friends,

I hope this weekend is a wonderful one for you. We are enjoying a lazy day at home today and narrowly missed the inches of snow that so many across Kansas experienced last night. Can you believe...snow in April???

We are doing well. Joshua continues to feel great and I'm glad to report he is pain and symptom free:) He and Craig went bowling today to "practice" for tomorrow afternoon. Joshua has been invited to a friend's bowling birthday party tomorrow. As expected...they had a blast. Joshua was happy to report that he had gotten a strike and some spares. Overall, I think he was happiest to spend some "guy time" with his dad. He cheered when Craig asked him to go and said that it was "just a boy thing". I am so thankful for their relationship, and often tell Joshua that he is so lucky to have the best dad in the world:)

Bethany is also doing well. She had a fun field trip to the zoo this past week, and is going to be working hard on a science experiment this coming week. Lately I have been marveling as I watch her leave her childhood behind. When she stands on her tip toes, she looks me in the eye. I have no idea when she grew up, but she is in process of becoming a very special young lady.

So as you can see, April brings us doing normal school things and enjoying abnormally cold weather. We haven't been to the doctor in months and I'm reminded of how special these days of normalcy are. We do have a clinic appt. coming up next month and will be discussing with our doctor our desire to stop scanning. That ought to be interesting.

Thanks for taking the time to stop by and check in with us. I pray God blesses you richly as you proceed down the path He has called you to. Know that He loves you fiercely and will be faithful to the end! I guarantee it, cause I have seen it with my eyes, ears and my heart!

Thankful,
Janene

Wednesday, March 14, 2007 6:22 PM CDT

Update on March 21
4 years ago today, we heard the official diagnosis of Stage IV Neuroblastoma. Treatment began the following day. God has been good! Join us today in praising God for ALL He has done in and through Joshua's diagnosis of cancer!

Hi there!

4 years ago today...

*I took Joshua to the doctor for the 3rd time in a week!
*Joshua had his first ultrasound
*Dr. Vansickle called and said there was a "mass"
*We heard "lymphoma" as the worst case scenario
*Many tears came...many notified
*We packed our car and drove to KU Medical Center
*We met wonderful Nurse Kris
*Dr. Deb told us it was either "mono" or "cancer"
*Joshua had his first xrays
*Dr. Deb said "it's cancer"
*Lynda G. visited and brought a beautiful Hope angel
*Grandpa and Grandma's arrived
*Bethany asked me if her brother was going to die
*We Cried
*We prayed
*Many Many Many began to pray
*I learned to cry in the bathroom across the hall
*We met Jeremy from Salina
*We saw Jeremy's hickman
*We learned that Morphine is a wonderful pain reliever
*We called for more and more morphine
*I slept in the hospital bed with Joshua
*Craig slept on the chair bed
*We wondered how long we had with our son
*Hope was real

When I think back to March 14, 2003, I feel it was a sacred day. Our world turned upside down, yet God did such a work in our lives, that I cannot begin to explain it.

Here we are 4 years later. We are still blessed to have Joshua by our sides, and oh what a journey it has been! Many of you have prayed for us for 4 years. You are such treasures to our family. Thank you so very much for the support and encouragement you have been for Joshua and our family. We thank God for you and know you were His tools to help us through the valley of the shadow of death.

Today...Joshua is a happy and healthy 2nd grader. He and Bethany have the next week and a half off from school for parent teacher conferences and Spring Break. He came home as usal today...happy as a lark. We were memorizing some scripture for Awana tonight and he happened to come across a verse about being "joyful". He smiled at me and said that he wanted to be joyful all the time. I laughed to myself and thought "Oh Joshua, you couldn't not be joyful".

I marvel and shake my head every day when I look at my son. Our journey isn't over, nor will it ever be...but I am witnessing miracle after miracle in his life and in mine. You see, God used Neuroblastoma to change our lives. It's still a process in work, but one I am thankful for.

Who knows what the next 4 years will bring...as usual, tomorrow isn't promised but we are learning to make the most of today. And that alone is something to celebrate!

Happy 4 years Joshua!
I love you.
Mommy

Sunday, February 11, 2007 5:22 PM CST

Hello Wonderful Friends!

I'm happy to report that all is well in our home this February! Joshua is feeling great and is spending his time reading, playing video games, happily doing homework and recently even...drum roll please... playing with dogs.

If you know Joshua, you understand that Joshua has had a "HUGE" fear of dogs for many years. No matter how calm or how small the dog was, Joshua would go running and screaming from it quickly. Recently, Bethany has been dog sitting for our neighbor. He has 2 indoor dogs that Bethany is visiting twice daily and feeding them, playing with them etc. Joshua began by watching from outside, but yesterday came in. Before long, he was playing ball with "Cody" whose only goal in life is to play catch with a little boy over and over again. Cody will never in his lifetime tire of catching a ball and he is a lively dog. That's why it came as such a shock for me to see Joshua interracting with him in such a beautiful way. Joshua even wanted to go back today and that's where the rest of my family is right now. Joshua may end up being a dog lover thanks to 2 special dogs named Cody and Lanie. I sure hope so:)

Valentines Day is approaching. Joshua and Bethany each wrote out valentines for their classmates last night. I enjoy doing that with them each year and am so grateful for that opportunity. Joshua is giving "sports valentines" with little tatoos inside and Bethany is giving kitten and puppy valentines of course!!!

Bethany is scheduled to go skiing this coming week on Wednesday with her school. The 5th - 8th graders go to "Snow Creek" in Missouri yearly for a PE field trip. My ski loving daughter is counting the hours.

Overall, things are going well and I'm thankful for a weekend of rest in which to reflect over the many blessings of 2007 already!

I hope your Valentine Week is filled with blessings! Don't forget to take time to enjoy them. Life is too precious and too filled with blessings from above to not pause to say thank you!

In His Incredible Love,
Joshua's mom...Janene

PS: We are so privileged to have each of you still stopping by to check in on Joshua. We thank you and thank God for your faithfulness to our family.

It would mean a great deal to me if you would take a minute to visit the web site of a dear friend of mine. Her son, Ezekiel will be born in a few short weeks. He has been diagnosed with many medical issues that will likely cause his life to be very very short. He is a very special little boy who God is using in so many lives. Please let his mom Jessica know that you are praying for them as they anxiously await his birth. Thanks!

Baby Zeke's website is at the bottom of this page in the "links" section!

Monday, January 22, 2007 10:18 PM CST

Hello Wonderful Friends,

I am happy to report that the preliminary reports for Joshua's scans are very positive. I've seen nothing in writing, but Julie indicated today that the CT is unchanged (which is good) and the MIBG was also much better then 3 months ago. 3 of the 4 questionable spots were totally gone and the one paraspinal area of uptake from 3 months ago that remains today was noted as "unchanged".

Now I would absolutely love to hear the words "clean scans" come from my doctors mouth, but I have long since given up on that. Joshua's scans and reports always include something of question. I'm beginning to understand that that is our reality.

That being said, I also must tell you how happy I am. Hundereds of times during these past 3 months, I have counted on a sure relapse, but the news today tells me we're still hanging on. I'll never be able to tell you the fear is gone, but I can say with high confidence that my level of gratefulness is touching the sky. I am thankful for today. I am thankful for hope (the eternal kind). I am thankful for the life-changing presence of Christ in my life and I am thankful for a most wonderful gift named Joshua and the priceless reward of additional time here on earth with him.

The song we sang yesterday morning in church has been running through my head all day. It goes like this:

For all You've done in my life,
You took my darkness and gave me Your light
Thank You, Lord, thank You, Lord
You took my sin and my shame,
You took my sickness and heal all my pain
With a grateful heart, with a song of praise
With an outstretched arm I'll bless Your Name and
Thank You, Lord, thank You, Lord

With Gratitude,
Joshua's mom...Janene

Tuesday, January 2, 2007 0:19 AM CST

Happy New Year!

We want to wish you and your family a wonderful 2007! We have had a wonderful Christmas and New Years and we are nearing the end of our vacation time! Joshua continues to feel well and is free of pain and other symptoms that would be warning signs of NB.

Joshua has a clinic appt. and scans coming up this month. Both should tell us a lot about the questions and uncertainties we have had since Octobers scans.

I'll write more later! Have a blessed New Year and know that we are thankful for each of you!

In Hope,
Janene

Wednesday, November 22, 2006 7:41 PM CST

Hello!

A very Happy Thanksgiving to each of you!

We have so much to be thankful for...

Craig is home safe and sound from half way around the world. Joshua is doing very well and continues to show no sign of pain or other symptoms. We are together as a family for one more blessed season of Thanksgiving.

That's enough for this mom to smile at and never stop thanking God for.

We wish each of you a wonderful day with family and friends, celebrating with gratitude all God has done in our lives.

With a heart of Thanksgiving,
Joshua's mom...Janene

Wednesday, November 22, 2006 7:41 PM CST

Saturday, November 11, 2006 6:46 PM CST

Hello Friends,

Well, no news is good news for Joshua so far! Joshua continues to feel great and has been pain free and complaint free since our last set of questionable scans. We will be headed in for a clinic appointment the week after Thanksgiving unless Joshua starts having symptoms that I need to have checked out. Some of you know that Craig is out of the country and I have decided to put off the clinic appt. until he is back. At this point, we are still playing the waiting game and are grateful for each day or "normalcy" as Joshua enjoys 2nd grade and Fall and his new Nintendo DS. I'll update when I know more.

Grateful for Hope,
Joshua's mom...Janene

Wednesday, October 25, 2006 10:53 PM CDT

Hello Friends,

Thanks to many of you who have been praying with us through these difficult days of waiting.

I wish I had more news to report, but at this point feel like we are in a waiting game.

I have received some clarification from our medical team about Joshua's areas of uptake, but still do not know for sure what is going on. Basicly, it could go either direction at this point. Since there is no other sign of relapse, the uptake areas could be normal ...or... this is the first sign of many signs of relapse to come.

For many reasons, Craig and I have decided to not get another opinion at this point and to wait it out. We will be monitoring urine and blood levels monthly and likely scanning again between Christmas and New Years.

Joshua is feeling great, as you can see by the pictures. He knew he wanted to be Joseph tonight for AWANA and kept telling me to make him a coat of many colors. I've never seen a cuter, more precious Joseph in the world and I have to say that tonight was a great night.

Without a doubt, this week has been one of the most difficult weeks of my life. The fear and anxiety astound me...even after almost 4 years. The other thing that continues to astound and amaze me is the love I feel for my son. I don't even know how to begin to put what I feel into words. So...I'll just stop trying and say I am blessed. Incredibly blessed to still have today...blessed to be walking together.

I will update again when I know something. Thanks for your prayers and support. They mean a great deal!

In Hope,
Joshua's mom...Janene

Wednesday, October 18, 2006 5:35 PM CDT

Hello Wonderful Friends,

Dr. Lewing called this afternoon and the results from the MIBG are unclear! Joshua has 3 questionable areas of uptake in his abdomen. The radiologists conferred all day and weren't ready to call it disease, but I could tell she was concerned enough to call which is significant.

Her plan involved scanning in 3 months and doing 1 month blood and urine tests between now and then.

Our plan will be different, but we can't take any steps until the MIBG scan is signed and faxed to us so we can read it for ourselves. Since the scan wasn't finalized yet and since the radiologists were all conferring with each other, I'm not sure what exactly the final report will read.

Likely we will have her send the scans to Dr. Kushner in NYC for his suggestions and then act accordingly. I'm guessing he will recommend follow up scans in 1 month vs. 3 months. We will wait and see!

Her phone call brings us to a very uncertain and scarry time. We will face the uncertain future together with the comfort and peace that God promises as He walks by our side.

We do so appreciate your prayers as we take the coming steps with faith and not with fear!

With Hope (the eternal kind)
Joshua's mom...Janene

Tuesday, October 10, 2006 11:09 PM CDT

*Thursday night*
We've made it through the majority of our scans and I know very little yet as usual. Joshua's LDH level was a very high normal, but about unchanged since our last appt. 3 months ago. My opinion of the MIBG scan is that he has no disease in his arms, legs or head. Now the chest and abdomen...I just usually wait to hear the word from the report! I'm cautiously optimistic at this point. We'll probably hear the CT, MIBG and Urine level reports on Monday. I'll update when I hear them. Thanks for your prayers.

Dear Friends,

I am up too late tonight pondering the next 3 days of scans for Joshua. We have a full day tomorrow and 2 more half days Thursday and Friday. Craig is confident that things will be fine and I'm scared to death! His high end of normal LDH and urine markers 3 months ago and enlarged neck node are never far from my mind and the reality of so many of the children we've gone through treatment with either being relapsed or gone already is overwhelming on nights like tonight!

Joshua has a wonderful CD he loves to listen to that has an incredible song on it. It is my prayer for tonight.

"We need courage, courage to face the day
We need courage, only God will show the way.
No matter what the circumstance, He'll always see us through..........................."

If you're checking in on us today or Thursday and Friday...I'd sure appreciate your prayers:)

Thanks from a courage seeking mom!
Love,
Janene

Saturday, October 7, 2006 7:52 AM CDT

Dear Friends,

8 years ago, Craig and I were in the hospital, getting ready to meet our son! Never in a million years would I have guessed on that day, what a blessing was in store for us!

Yep, you guessed it...today is Joshua's birthday, and we are celebrating and counting our blessings. God has been so good to us and we are privileged to have the opportunity to celebrate with Joshua today.

*Joshua just came in and read what I wrote and saw my tears. He almost started crying with me and said "mommy, that's the greatest poem ever".

Today is a milestone for other reasons as well.

7 years ago, we were in the hospital with my dad, getting ready to see him ushered into Heaven.

3 years ago, we were in the hospital for a month with Joshua as he was having his stem cell transplant.

2 years ago, on his birthday, Joshua asked Jesus to come into his life and forgive his sins and to be his boss!

October is just going to a sentimental month for this mom. There's no getting around it, so I guess I'll do my best to remember and respond in a way that these types of life changing moments require!

So, I better run and get ready for Joshua's 2nd birthday party today. We have a crew coming over to celebrate and they will likely be hungry!

As I close I want to wish my son, the happiest of birthdays. I love you Joshua! You will always be my treasure!

Love,
Mom

Tuesday, September 12, 2006 10:00 AM CDT

Good Morning!

3 years ago this very minute, I was sitting in a very scary waiting room in the heart of New York City. Joshua was in surgery where the wonderful Dr. Laquaglia removed all trace of Neuroblastoma from his little 4 year old body. The nurses would come out periodically to give us an update...then finally I saw Dr. L. walking towards us. Never have I heard more wished for words then what he told us in that little room. He said "I took my time, and got everything I could see".

From then we went up to see Joshua. It was the first time and still the only time I have seen Joshua on a ventilator. I wasn't shocked because several other NB moms had prepared me well for what I would see. From there, we took a short ambulance ride across the street to the ICU at NY Presbyterian. I'll never forget the process we went through to get him up and going after that surgery. But, within a week, we were back at the Ronald McDonald House and planning to get back to Kansas.

Only in my wildest dreams could I have hoped for Joshua to be free of Neuroblastoma for 3 entire years. I knew all to well the realities and barely dared to hope! But, here we are and I have no words except "Thank you god!"

_____________________________________________

Now, on to today...

Joshua is doing well. 2nd grade continues to be a smashing success. I am meeting with his teacher this afternoon to see if she agrees:)

Joshua's schedule once again includes Awana on Wednesday nights, Christian Challenge on Thursday nights, Choir on Sunday nights and a lot of fun and happiness in between.

The other day I had bought him a package of Hi C drink boxes for his lunches at school. While he was getting ready to go that morning he stopped and said "Mom, don't forget to pack me some "Hick" juice." It took me a few seconds to realize he was reading "Hi C" as "Hick", but then got quite a chuckle from it:)

Scans for Joshua are coming up the week of October 9th, but not before his 8th birthday party. We intend to celebrate in a mighty way because we are blessed for today!

I pray you recognize the blessings all around you today!
In Hope,
Janene

Monday, August 28, 2006 10:38 AM CDT

Good morning wonderful friends!

I just wanted to write a short update to say that 2nd grade is a smashing success. Every day when I pick Joshua up from school and ask how his day was he has the same response.

He gives me a "tony the tiger gggggrrrrrreat!" and then follows that by "mommy it was awesome". For those of you who know my Joshua, you understand that his response doesn't mean something amazingly wonderful happened that day. That's just a normal day for him. It's like he expects his day to be ggggrrrreat! And it takes something pretty rough to make him change his mind.

Our weekend was an eventful one. We had a storm Friday and found out our basement isn't as dry as we had been told. Bethany and Joshua found a nice little waterfall coming in from one of the windows in the middle of the downpour. Then, we lost power for about 14 hours and overall, it was quite exhausting.

The high point was very late on Friday evening. For those of you who know Joshua's fears, you understand what he would be like in a dark house with thunderstorms all around and water pouring into his basement.

Joshua's response was to pray. Ok...first he cried and carried on a lot, but then as I was cleaning up watersoaked boxes, I heard his voice in the other room talking to God. I am so grateful that Joshua understands who holds this world in His hands. I am also grateful that this same God who holds our world in His hands cares infinitely about the details of our lives. He proved that by hearing a little boy's prayers and granting peace in the midst of the storm.

Isn't that just like God!

I hope your day is a blessed day! Don't forget to make it a gggggrrrrrreat one!

Janene

Tuesday, August 22, 2006 12:34 AM CDT

Hello Wonderful Friends!

Today is a wonderful milestone for our family. The picture above tells the story that I never thought I'd see! The story goes something like this...

When Joshua entered Kindergarten, he was still in treatment. I was so happy to send him to school that year because I didn't know how many years he would have. Early that year when I was picking him up from school, we were talking with Mrs. Adams (Bethany's 2nd grade teacher at Pauline). When we were done, Joshua asked me when he would have Mrs. Adams for his teacher. Without thinking, I replied, "Joshua, you will have Mrs. Adams when you are in 2nd grade".

Immediately, it hit me and I started to cry. The pain of the reality of Neuroblastoma hit once more as Craig and I looked at each other...both asking the silent question "will he make it to 2nd grade?". I remember telling Craig that day "won't it be something, if we make it!".

That brings me to today. We have made it, and we are so incredibly grateful. Joshua is here with us on this earth. Right now, he is getting to know a room full of 2nd graders. He is in a new school and doesn't get to have Mrs. Adams, but he made it. He is with us, and the only response I can think of is to raise my hands to heaven and say "thankyou"!

So today is filled with pause as I reflect with gratitude on all God has brought Joshua through. As I reflect, I am mindful of the many families we have learned to know over the years who don't have the joy of sending their child to school this year. I struggle vehemently to understand why Joshua is sitting in 2nd grade this minute while others are not. I well know by now that the answers will only come in eternity and that my only choice is to continue to trust, hope and choose gratefulness each day!

So for now...this grateful mom is signing off! I'm already counting the minutes till I can pick up my 2nd grader and my 6th grader and hear about their day!

Janene

Wednesday, August 9, 2006 11:05 PM CDT

Hello Friends,

Our summer is just about over and I wanted to write a short update to say that Joshua continues to do well. I June, we had a scare about an enlarged lymph gland in his neck, but the blood work and urine levels didn't indicate a problem as far as our doctor was concerned.

Joshua has had a great summer. He has enjoyed each and every day with the sweetest spirit I could ever imagine. He continues to get more joy out of making people happy than anybody I know. Several weeks ago, our family moved from the outskirts of Topeka to the center of Topeka. Joshua and Bethany have been thrilled to move into a new home and get used to a new environment. The biggest plus for Joshua is that he now has a basement for when the scarry storms come through Topeka.

Joshua will also be starting to attend school at Heritage Christian in about 2 weeks. He is excited to be going to Bethany's school and he seems to be ready! I am thrilled to have a 2nd grader. God is pretty awesome...don't you think?

Joshua's scans will be coming in October. I asked Julie to schedule them after October 7th because we need to have the best 8 year old boy birthday party ever. I don't want to worry about scans until after his party. Joshua is already preparing for this birthday. He is making a list and trying to talk mom and dad into a Nintendo DS and a new Game Cube! That's just not going to happen:)

So, in a nutshell, that's what's going on. We are incredibly blessed and mindful of all we have been given! Thanks to each of you for taking the time to stop by and check in on our son! We appreciate each of you!

With Hope,
Janene

Wednesday, June 14, 2006 1:42 PM CDT

Hello Friends,

It has been a long time! I do want to let you all know that Joshua is doing well and is having a great summer. He is enjoying the pool and hanging out at home with mom. He is eating like a horse and laughing as much as any 7 year old every could.

We had a great evening last night as we spent time at Ken and Lynda Gimple's home. Joshua enjoyed fishing in their pond and Bethany loved riding Shaw. They had a blast playing with Sarah and Jonathan, Kyle and Kendra, and Alex and Elijah.

Thanks for stopping by and checking in on Joshua. We appreciate it greatly.

In Hope,
Janene

Friday, May 5, 2006 8:29 PM CDT

Hello Wonderful Friends,

Happy Weekend to all of you faithful friends and prayer warriors who continue to check in on Joshua. Thank you so much for who you are and what you do! We continue to thank God for each of you!

It has been a rainy week for us here in Topeka. We are enjoying a cool Friday evening and we are looking forward to the weekend in front of us. Joshua continues to be well! He is pain free and happy and a constant joy for us.

Next week, Joshua will receive his final re-immunizations. The whole process has taken a long while and I will be very relieved when he is done. First Mumps is all around us and now I hear Measles is in Kansas and just a few hours away. That's nuts!

Besides that, we have nothing medical to discuss. Joshua would want to tell you all that he is looking forward to swimming, swimming and swimming some more. I think he will spend a lot of time in the pool this summer:) How awesome is that? I already know I will watch him in wonder and never take for granted the miracle of another summer to spend together.

Thanks so much for taking the time to stop by and check in on Joshua. May the God of hope fill you with all joy and peace as you trust in Him so that you may overflow with hope by the power of the Holy Spirit! Romans 15:13

In Hope,
Janene

_________________________________________________

Ladies First!

As Joshua was walking into his school today, I saw him pause and hold the front door open for the lady following him. Due to the weight of the door, that task is not an easy one. From my car, I could almost hear his sweet voice ringing out saying “Ladies First”, just as he always says when he runs ahead to open the door for me. I have wondered for quite some time, at the joy my first grader receives from opening the door for other people.

Without a doubt, Joshua learned the joy of opening doors for others, from his dad. Craig has been a great model for him of what it looks like to put other people ahead of yourself. Joshua has watched and learned with all of his heart and oh how I love to see it lived out. It started by Joshua wanting to imitate his dad and become just like him. As he has practiced imitating and becoming like Craig, I believe he has also started recognizing what putting other people ahead of himself does for those around him. He is recognizing the worth of others through the imitation of His Father.

I hope and pray the same is true for me. In Ephesians 5:1, Paul encourages us to be imitators of our Father. Too often for me, my mind is focused on my needs, my schedule and my responsibilities. With that focus, I can’t imitate my Father. I must fix my eyes on the one I want to imitate, if I have any hope of becoming like him. (Romans 12:2) I must watch Him work, communicate with Him, learn who He is and make the decision to become like Him daily. Through that imitation, I can learn from Him and develop God’s heart for those around me. That heart has the power to change the world! We will forever impact eternity if we learn to fix our eyes on Him and be His imitators!

Friday, April 21, 2006 8:52 PM CDT

Hello Wonderful Friends,

It has been a while! Joshua is doing well and we are finally through our scans and scan concerns!

It's taken a while, but I can now say with some amount of confidence that Joshua has clean scans. His MIBG scan was clean without question, which I knew after watching the scans. But, the CT was a different story. When the radiologist finally got his final report drafted, he mentioned a spot on Joshua's liver. He said it was unchanged since our scans a year ago in June of 2005. Now when I looked back at the scan report from then, a different radiologist noted that the liver was unremarkable (which means no disease). I never knew any spot existed.

Now, as you can imagine, my panic level rose a notch or 2 (or 500):) Today and yesterday I've been on the phone requesting reports etc. and talking with our NP. The concensus that I've come up with is that the current radiologist is more detailed then the other 2 who did his CT reports during our last 2 scans. They both didn't mention any concern about his liver. Our current radiologist is very clear to indicate he does not feel it is NB because it has been unchanged for a year and because of the low attenuation! He said it is likely an adenoma or a focal nodular hyperplasia. (Basicly a benign tumor)
There are other possibilities, but the docs are not concerned in the least.

I'm not there by any means, but I am relieved after finding out the details. The clean MIBG, normal urnine levels, normal LDH and the fact that the spot was unchanged in a year and the fact that 2 other radiologists didn't even find it worth mentioning make me ok with monitoring it.

So, it's been an up and down week. I have felt fear, panic, questions and when it comes down to it a huge gratitude for today. I'm again reminded of the gift of today with Joshua and the lack of another one promised. For now, all is well! We have made it through another set of scans and we will scan in 6 months if all goes well.

Thanks for stopping by and checking in on Joshua. He has 4 weeks left of 1st grade and is looking forward to summer in a huge way. For the first time, Joshua is playing outside like a boy. In the past, we have had a difficult time getting Joshua outside. He has been so used to the comforts of computer games, TV and GameCube/GameBoy etc. that he hasn't wanted to play ourside. Now, all of a sudden he doesn't want to come in. He is climbing trees, swinging and jumping off of the swing, riding his scooters and riding bike. It is such a fun thing to watch.

I hope you have a great weekend! Enjoy time with the ones you love most and make the most of each minute!

Grateful for today,
Janene

Friday, March 24, 2006 4:58 PM CST

Hello Wonderful Friends,

Happy Spring Break! We just got back home from our trip to Colorado, and we are happy to be home:)

Joshua is doing well. He and Bethany had a grand time at our annual Spring Break Conference near Buena Vista with our college students. They loved taking Sarah and Jonathan with us and enjoyed the time immensely.

I wish you could of heard Joshua's gasp when we were driving into Colorado Springs and he finally saw the mountains. His gasp spoke volumes as we all appreciated the vastness of God's creation before us. It was truly a beautiful time of appreciating all of God's beauty.

We finished our trip by driving through Denver and spending some time with Uncle Earl and Aunt Phyllis and Craig's cousing Lyle. We have never been able to visit them as a family and were privileged to be able to spend time with them. Aunt Phyllis made Craig's favorite fried chicken and showed Bethany her sewing skills. Uncle Earl showed Joshua his antique slot machines and Joshua practiced hitting the jackpot. We all had a wonderful time. It was a perfect ending to a great week in the mountains.

We have a few more weeks before scan week. April 11th will be the start of our scans and I'm anxious for those days to be behind us. But for now, Joshua is doing well for which we are thankful.

This past Tuesday marked a very special anniversary for Joshua. Tuesday was our 3 year anniversary from receiving the diagnosis of Stage IV Neuroblastoma. That day forever changed our lives! As we think back over these past years, so many memories come flooding back. With each memory comes the realization of God himself walking with us every step of the way. That's where the peace came from, that's where the strength came from and today, that is where my HOPE comes from.

Thankful for HOPE,
Janene

Friday, March 3, 2006 12:01 AM CST

Hello Everyone,

Happy Friday to you!
Joshua is doing well these days except for earaches, infections etc. The doctor says he still has the tubes in, but something is up. We're presently doing drops and I'm thinking we need something else. We're due back at the doctors on Tuesday.

Well let's see...the new news from Joshua is that he wants to take karate lessons. He practices him "moves" all the time and usually is asking me to watch. He got a toy sword from Mr. and Mrs. Gimple when they returned from China. He includes the sword in his "moves" and ends up putting on quite a show. It's been a lot of fun for us lately.

Speaking of that sword...it accompanied Joshua to school this morning because today was Joshua's day to bring an item for show and tell. His class has a leader each week and on Friday that person gets to bring an item to show the class. Joshua didn't even have to think twice. He knew exactly what he was taking.

Big sister Bethany is also doing well. Craig accompanied her and her class on a special field trip this past Tuesday. They went to Ski "Snow Creek" on the other side of Kansas City for the day. The day was significant for Craig and Bethany and I'm grateful they had that opportunity.

In a few weeks, we will all be leaving for Colorado. Once again, we have the opportunity to accompany our college students on our annual Spring Break Conference in Buena Vista, CO. Bethany and Joshua are both excited to go this year. One extra benefit is that their friends Sarah and Jonathan will be coming along. What fun they intend to have!

Joshua's scans are scheduled for the 2nd week in April. Once again as we approach that time, I find myself making the same choice over and over again. When the panic comes, I choose to remind myself to be grateful for today. I know all too well that we aren't promised tomorrow, and that makes today incredibly precious.

So thankful for the journey,
Janene

PS The other day, I wrote the following story after a significant time with Joshua.

_______________________________________________________

Thank-you

The other day, my son Joshua was watching a Bernstein Bear Video, in which brother and sister bear were learning the importance of saying “please” and “thank you”. I didn’t realize the impact it was having on Joshua until a few days later.

As usual, I went to pick him up from first grade. As we pulled in our driveway and I opened the door to get out, I heard him say “mom”, and then pause. I looked in the back seat and wondered what he wanted. I saw him thinking, and before I knew it he said “mom, thanks for picking me up from school today”. Immediately I was amused. It appeared as if he had decided that he wanted to thank me and then paused to think until he found something worthy of thanking me for.

The next day I received a different thank you in the same “thinking” fashion. He ended up thanking me for his new Sonic Riders game. By then, I was totally amused by Joshua’s new thankful spirit and made a mental note to myself that “Bernstein Bear” videos were worth the money!

While the smile was still on my face, I realized a deeper truth. Joshua had learned that the simple word “thank you” made a difference to people around him. Because of that, he went around trying to think of something to be thankful for and someone to be thankful to.

It’s easy when we get gifts, or when people do something extra special for us. But it’s a little more difficult to walk around “looking” for that seemingly insignificant thank you. The difficulty rises because I must focus less on myself and more on those around me.

As a child, my mom taught me to say “thank you” when someone did something nice for me. I still try to live by that principle and to teach it to my children. But, when I wasn’t looking, Joshua took it a step further and taught me about the true heart of thankfulness. If my heart is truly thankful, I will live my life “looking” for people to say “thank you” to. I won’t wait for that special gift or significant sacrifice. I will make the choice to be thankful and fill in the blank later.

Friday, March 3, 2006 12:01 AM CST

Thursday, February 2, 2006 10:55 PM CST

Hello Wonderful Friends,

Joshua continues to do well. Life has been somewhat "normal" for us lately and it has been good. Joshua continues to enjoy school and is doing quite well.

We did have a clinic appt. last week which was OK. Joshua did well with the needle and mom was happy to see normal blood work with a normal LDH level. We continue to look towards April to do the next set of scans.

Thanks for taking the time to stop by and check in on Joshua. We continue to appreciate each day and often thank God for all He has accomplished within the last 3 years. Yes, we are approaching the 3 year mark since Joshua was diagnosed with NB4. We'll have to have a party on March 21st. That will be the day!

Have a great weekend!

With Love,
Janene

Wednesday, January 11, 2006 7:44 PM CST

***New Pictures Added In Photo Album***

Hello Wonderful Friends,

Happy Wednesday to you all!

I hope this week finds you all happy and healthy and in the midst of the start of a wonderful 2006!

I am glad to report that Joshua is doing great and feeling better! He continues to live life with few concerns and much joy!

Last week, he and Bethany stayed in Newton with my mom while Craig and I took a group of our college students to Oklahoma City for the Life Impact Conference. The kids had a wonderful time and hardly missed us at all. I was happy to see that Joshua is separating easier from us and didn't even need to call and talk on the phone. I called home the night before we were to pick them up and he said "I don't need to talk with mommy, I will see her tomorrow"! That is so different then what he has been in the past and I can't help but marvel at my "miracle" growing up!

Both kids started back to school on Monday after their extra long vacation. Joshua is happy to have Mrs. Lind back in the classroom after her maternity leave and Bethany is glad to be back in daily contact with her friends. Mom is just glad to be back in a routine of sorts and is trying to do some quick Bible study writing for this coming semester.

Well, I'm glad to say we just don't have a whole lot exciting happening around here. Nothing medical feels great and we continue to thank God for each day we have together without the trials of cancer. I'm glad I don't know the future, because it allows me to focus on enjoying today. I sure hope you are making the choice to do the same. In the midst of the ups and downs of normal life, it's not always easy to make that choice, but I can say with boldness that it's a choice you won't regret and it is worth it!

With Joy,
Janene

Monday, January 2, 2006 7:28 AM CST

Good morning Wonderful Friends and Happy New Year!

What a great Christmas and New Years we have had. Joshua is doing great and he and Bethany enjoyed the holidays immensely.

We spent Christmas Eve with Craig's family in Melvern, and then traveled to Newton on Christmas Day to spend with my family. Since then we have been home a lot just the 4 of us and it has been wonderful!

We spent New Years here at home as a family. Joshua did go to sleep, but Bethany stayed up to see the ball drop. She was so excited! It has been so nice for us to relax together and play together. New Years Eve found all 4 of us on the kitchen floor together putting legos together. It was the best New Years ever!

Today, Craig and I are leaving for Oklahoma City with 23 of our college students. We are going to spend the week at a conference called Life Impact. The kids will be staying in Newton and are looking forward to their "fun times".

When we get back, we'll be about a week away from classes beginning again at Washburn and the semester will be upon us. We are excited for this coming semester and all God will accomplish in and through our family, as well as our ministry.

Thanks so much for taking the time to stop by and check in on Joshua. We appreciate your continued prayers and concern as we continue down this road!

God Bless You as you live 2006! May it be for His glory and renown!

In Hope,
Janene

Thursday, December 15, 2005 7:02 PM CST

Hello Wonderful Friends,

Merry Christmas! I hope you are enjoying this magnificant season of the year! This last week has been a quiet one for our family. Bethany came home sick last Friday and has been sick ever since. I took her to the doctor on Tuesday and she was positive for Influenza A. She got the flu shot last year, but Joshua was the only one who got it this year! Big mistake!!! So, we have been mostly home, waiting it out. She is getting better every day and hoping to go to school tomorrow. Bethany missed both the church program and her school program. She also missed her first BB practice, a gingerbread house party, piano lessons etc. I told her she had to wear her Christmas dress this Sunday cause it's still unworn and I at least want to take pictures.

Joshua had surgery this morning to get another set of tubes in his ears. He did very well. Craig and he were home again before 10:00 this morning. I'm hoping his ears will remain free of fluid for the rest of the winter. We have been so blessed that his hearing has not been greatly affected from his cancer treatment. Because of that, we tend to be cautious about his ears, in order to protect his from losing more.

On Sunday, Joshua sang in the church Christmas program. I always love to see him sing in a performance. My eyes are glued on him as I ponder the miracle before me. I'm not sure why we have been blessed by this extra time with Joshua, but I am incredibly grateful!

Our ministry is over for the semester. We are already planning for January, but are grateful for a few lighter weeks. Hopefully if we can all get well, I can finish up the shopping and do a little baking so that we will be ready for Christmas How I do love this time of year!

Next week I get to do both Bethany and Joshua's room parties for Christmas. That ought to be fun and probably a bit busy. Doing a Christmas party for 1st graders is easy, but as they get older, it sure gets harder.

Thanks for taking the time to drop by and check in on Joshua. We are grateful for you and your continued prayers on his behalf. Our next scans aren't until April! That is amazing. We will go to the clinic for blood draws etc. in early January. Life is moving on and we are blessed.

I pray you have a most joyous Christmas celebrating the birthday of Jesus. Because of Him we have life, peace, strength and hope! What a reason to celebrate!

Merry Christmas With Love,
Janene

Tuesday, December 6, 2005 7:20 PM CST

Hello Wonderful Friends,

All is well in the Freerksen home this evening! It's cold, Christmas is coming, the kids are excited and mom is busy! Sounds kind of normal doesn't it!!!

The start of December has been a bit of a whirlwind for us. We've been sick with colds and a bit of the stomach flu, plus we're busy winding down our ministry for the semester. We have managed to throw a few fun things in the mix as well. Friday night, I took Bethany and her friend Hannah to the Steven Curtis Chapman/Mercy Me Christmas concert. We had a wonderful time together. I enjoy watching Bethanys love for music grow. Steven Curtis Chapman is her all time favorite.

Saturday the kids and I went to Elbing for my niece Lindseys 1st birthday party. The kids had a blast playing with their cousins despite the cold!

The kids are both winding down from this semester as well. Bethany is busy planning a Christmas report on Ecquador. Joshua is busy with addition, subtraction and reading and spelling. Tonight we practiced spelling words. I get so much enjoyment from watching him progress academically. He continues to love school and work at his homework diligently.

I believe we're supposed to get snow tomorrow. I can guarantee it won't be enough for my kids. They want to get pounded with a blizzard. They are waiting:)

Medically speaking, Joshua continues to do well. We do have another surgery for tubes in his ears scheduled for next week. He continues to have difficulty with his ears and I am thankful for the tube option.

We did do his heart tests last week. Joshua loves doing the echo, but doesn't care for the sticky pads with the EKG.

Joshua continues to be free of pain and is his usual joy-filled self. His most recent pastime is Luigi's Mansion on GameCube.

As we approach Christmas, there are so many things I am truly grateful for! There is one thing that sticks out though above the rest. I am thankful for Hope! That very first Christmas so long ago, hope was born. God saw our need and met it by sending us the gift of His son. Jesus came to earth to die for our sins and be the bridge we could cross over on to get to God. Because of that single act, hope was born. Certain hope of spending eternity with God if we have that personal relationship with Him. That has always been significant to me, but now it is everything. Facing the uncertain future here on this earth with Joshua has taught me to focus on the most certain future we have as God's children for eternity. This is the hope for which I am truly grateful for this Christmas.

I pray you know that same hope in a personal and life changing way this most blessed Christmas season.

With Anticipation,
Janene

Thursday, November 24, 2005 7:13 PM CST

Happy Thanksgiving!

I just wanted to write a short update to wish you and your family a wonderful Thanksgiving! We are celebrating with Craig's family now and will be with my family in Newton over the weekend! We do so, mindful of the blessing of another year together as a family of 4! My heart is overwhelmed today by the sweet mercies of God that have astounded us in so many different ways! He has been faithful to us through the best of days and the worst of days! For that we say thankyou!

With Love and Thanksgiving,
Janene

Wednesday, November 2, 2005 9:17 AM CST

Good morning Wonderful Friends!

Happy November! Wow, time flies these days. I'm happy to say that Joshua is doing very well. Following his scans a few weeks back, he has been pain free and feeling great. He was so excited for Halloween and was "The Thing" from The Fantastic 4 part of the time and "Mr. Skeleton" the other part.

On Saturday I took the kids to Melvern for their Fall Festival. The kids rode rides and enjoyed playing with Grandpa and Grandma. They took part in a costume parade and Bethany came away with 2nd prize for her Juliet costume. She told me "Mom, now I just need my Romeo"! This mom's not ready for that yet, but she sure did make a beautiful Juliet.

After the contest, I went up to Joshua who was dressed dashingly as "The Thing". He looked up at me with his beautiful eyes and said "mommy, they didn't choose me". I just smiled and said "Oh Joshua, that doesn't matter cause I choose you". That was all he needed and he was a happy camper the rest of the day. I am blessed with a very easy going son that doesn't really care if he wins contests etc. He just needs the assurance of the love and loyalty of those he loves most. Thank goodness for that cause I have plenty to give him:)

Halloween was a busy day for us. I worked at the church all day getting ready for "Trunk or Treat", and then went to Joshua's school to help with his Halloween party and see their costume parade. Joshua had a blast and got to lead his class for the parade.

Trunk or Treat that night was great! One estimate I heard was that 2,000 people attended. The kids went down the rows of cars and got candy at around 70 or 80 trunks. The trunks were decorated very creatively and the kids were facinated. I was helping with the hot dogs etc. so Craig got the dad privilege of doing the trunks and all the rides with Joshua. Bethany managed to do her own thing a lot of the evening. With mom busy in the kitchen and Dad with Joshua, she figured she could act 28 and be on her own. We did finally catch up with her, but it wasn't an easy task.

Last night, we continued our Fall festivities and went to Ken and Lynda Gimple's house for a hot dog roast. We had so much fun and the kids got to play with Sarah and Jonathan all night. Thanks Ken and Lynda for a wonderful evening. It was a pleasure.

Besides all that, things are going well. Ministry wise, things are going great. We just had the distinct privilege of hosting Dr. Phillip Johnson and Mrs. Johnson as he spoke in Topeka. Dr. Johnson spoke for our students at Christian Challenge and at a number of other places throughout Topeka. Craig had the time of his life spending time with this couple. It was a once in a lifetime opportunity for him which he enjoyed immensely.

In November, we have a one day conference planned for our students as well as 2 Thanksgiving Dinners. One for Christian Challenge and one for International students at Washburn. I think I'll be cooking a lot this month!

I love November! What a beautiful time of the year to stop and remember to say thank you to God! Many of us do that every day, but I'm glad for the opportunity to FOCUS on thanfulness. I hope you will have the chance to focus on being thankful during this wonderful season. Perhaps an offering of thankfulness will put life in it's proper perspective for you and I! Wouldn't that be a wonderful reason to celebrate!

Speaking of celebrating...when Joshua was brushing his teeth this morning, I was asking him if he remembered what tonight was. We always do AWANA on Wednesday evening, but I wasn't sure if he was remembering. He thought a minute and he said "what are we celebrating mommy?" I had to smile at that comment. The first thing he figured was that we were "celebrating something". I long to instill in my family that life is a precious gift that is very fragile. The moments we are given must be seen as special moments, worthy of celebrating. Perhaps that is rubbing off on my kids. I hope it is and will continue to do so. In the meantime though, I have some planning to do. I need to find a reason to celebrate this evening! After all, Joshua's expecting it and why not?

Celebrating and Thankful,
Janene

Monday, October 24, 2005 5:56 PM CDT

Hi and Happy Monday!

Good news!
Joshua's MIBG scan is clean which makes us done with scans until next April! We are happy and blessed and enjoying today as a family!

God bless you and thanks for your prayers!
Janene

Friday, October 7, 2005 10:02 PM CDT

Friday, October 14 SCAN UPDATE
With one day to go on our MIBG marathon, I'm happy to report that Joshua's CT scan is clean and his urine markers are within normal range. In addition to that, the glimpses I saw of his MIBG scan on Wednesday indicate no change as well. We won't know official results from the MIBG until next week, but from all appearances, Joshua's scans are clean! I'll update more when I get the official word, but for now we're happy and rejoicing.

Tuesday, October 11th scan update:
Day 1 of our 4 day marathon is complete. Joshua did well with the I.V., CT scan, Hearing Evaluation and Pulmonary function test. He is the only one I know that seems to enjoy the whole process. The only results I have at this point are that his hearing is actually improved! He continues to have high decibal hearing loss, but in the normal frequencies, where speech happens, he is fine and shows some significant improvement since before his Transplant 2 years ago. That is a big praise. Now, we just have 3 more days which include the MIBG mini marathon and the waiting for results. Thanks for your prayers!

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

Happy Birthday Joshua!

Joshua, Happy Birthday sweet boy! You are 7 years old today and that makes today a miracle! Today was a day to celebrate, and celebrate we did. I loved having McDonalds with you at school in our special birthday lunch. I loved watching your face as your classmates sang Happy Birthday to you when I brought cupcakes to your room this afternoon. I loved the look in your eyes when you came home and saw the house decorated with birthday banners for your special day. I loved watching the excitement you had when you opened your gifts and your delight at receiving each gift. I loved watching the need you had to make sure you validated everyone who gave you a gift...trying to make us feel special. I love that you love pumpkins because they are happy faces to you. I love that we had pumpkins everywhere today just for you and your special day. I loved watching as you discovered each new pumpkin and appreciated it's smile. I love how you waited and waited for Sarah and Jonathan to come over because you wanted to share your day with the bestest friends in the world. Basicly sweet Joshua, I love you. I am grateful for another birthday with you and will try to memorize every moment of our day today and simply celebrate. You see Joshua, celebrating your birthdays mean we celebrate so much more than another year. We celebrate the almighty hand and faithful character of the God of the universe. He has worked mightily in your life sweet Joshua and He is our reason for celebrating. We are grateful people as we say thankyou and celebrate looking up!

Thankful for 7 years,
Janene

Tuesday, October 4, 2005 1:33 PM CDT

Hello Friends,

Happy October to each of you! I can't believe how fast the days are flying by!

Joshua continues to do well. We have scans coming up next week, but first get to celebrate his 7th birthday this Friday. What an amazing miracle that day will be!

Joshua has been enjoying school. He is showing much improvement in his writing and drawing skills. He continues to excel in his reading, and seems to like Math as well.

We start our scans on the 12th with CT scan and MIBG scan on the same day. We also have a Pulmonary function test and a speech/hearing evaluation so it ought to be a full day. On Wednesday and Thursday we will finish the MIBG marathon, plus we have a few other tests they throw in for the 2 year post transplant time.

That's right you heard it...Joshua will be 2 years out from his stem cell transplant on October 8th. It feels like yesterday to me, as well as a lifetime ago. Pretty strange if you ask me!!!

We're also approaching another anniversary. Joshua will be 1 year out from any treatment in the next week or so. It was 1 year ago this month that we finished our last round of antibodies in NYC.

So basicly, October is a month of anniversaries and a very special birthday celebration. I'm excited for his birthday, and of course getting nervous about the scans. Thanks for your prayers on our behalf as we approach these difficult days.

Bethany is also doing well. She loves 5th grade and has shown a lot of maturity in many areas...especially diligence. She is a miracle blossoming before my eyes and I am ever mindful of that as the days go by.

Thanks for taking the time to stop by and check in with our family. We appreciate your prayers for Joshua and your continued encouragement for our family.

With Love & Gratitude,
Janene

Friday, September 16, 2005 5:16 PM CDT

Hello Wonderful Friends,

Happy Weekend!
Just wanted to write a short note to say Joshua is doing well. He and Bethany just got picked up by Grandpa John and Grandma Myrle. They get to spend the night in Melvern tonight.

Joshua seems to be working on an ear infection. I believe a trip to the ENT will be in the works soon. I am expecting another "tube" surgery unless I miss my guess.

I'm still working on finalizing the scans for October. I dread the stress of those weeks coming up.

I hope each of you have a wonderful weekend. God bless you for checking in with Joshua and for keeping his in your prayers!

Looking Up,
Janene

Monday, September 12, 2005 10:02 AM CDT

Good Morning!

2 years ago this very minute, I was sitting in the waiting room of Memorial Sloan Kettering Cancer Center in NYC. I was waiting that very long day for Joshua to come out of surgery...hoping to hear that all of the cancer was removed.

I can remember just like it was yesterday. Dr. Laquaglia walked through the waiting room, we went into the consultation room and he said "I got it all". The next hours and days were extremely difficult for Joshua and all of us, but 6 days later, we were released and Joshua, for the first time, showed no evidence of Neuroblastoma.

We went on to do his Stem Cell transplant, radiation and the grueling antibodies at MSKCC. Next month, we will be 1 year out of any treatment, but today...we are 2 years out from the surgery that removed all visible traces of the monster we call Neuroblastoma. That is HUGE! Joshua has done well and we are grateful.

So, I just want to say thanks to each of you who have been praying and supporting us throughout these years. We thank God for you! You have helped make this journey easier and we are truly grateful.

Have a great week Looking Up!
Janene

PS
I also want to say Happy 2 years NED to my Joshua! The journey you have been through amazes me and your heart and spirit challenge me. Being chosen as your mother has been one of the most incredible privileges of my life. I thank God for each minute we have together as a family here on this earth, and hope we are blessed with many more. Thanks for being my sweet boy Joshua Michael! I love you always! Mom

Friday, September 2, 2005 5:46 PM CDT

Hello Everyone and Happy Weekend to each of you,

Joshua is doing well! He has had little complaints here and there of pain, but nothing consistant or overly worth worrying about.

Joshua is enjoying school and loves to do his homework when he comes home. He usually has 1 side of a page of phonics to do, which he seems to be understanding pretty well.

Medically speaking, we will take Joshua to KC on Tuesday of next week for a mole removal. He has many moles appearing out of thin air and one needs to be removed. That promises to be an interesting day...shots in the abdomen and laying still for the doctor to cut off his mole. To put it mildly, Joshua is not going to appreciate the idea of any of this. I've already asked Craig to go with us cause I have no idea what to expect.

Other than that, the next medical things we have are his scans in October. Believe it or not, his CT and Bone scan have been scheduled for October 7th (his birthday!) Since we didn't head it off initially, we decided to bite the bullet and make it a weekend trip. We'll get the lousy scans over first and then do the birthday thing up right. We will use our free Worlds of Fun tickets on Saturday. The kids are already excited.

This weekend, my sisters and mom will be here some. We hope to have a picnic at Lake Shawnee and give the cousins some good chances to make memories. We will probably end up doing some paddleboating and swimming as well.

Grandpa Johns birthday is Monday so we will go down and see him as well.

All in all, it's a blessed weekend and I'm looking forward to making some very special memories. Have a wonderful weekend and take some time to be grateful for the gifts we are surrounded with.

Looking Up,
Janene

Tuesday, August 23, 2005 12:15 AM CDT

Hi there,

I'm thinking I should write and update and just can't think of too much to say! Isn't that pretty awesome. I guess that means that we are officially feeling our "new" normal!!!

Today marks the start of week 2 in first grade for Joshua. He comes home excited each day and seems to love his teacher and new friends. He is especially excited to have another "Joshua" in his class. He asks often to have Joshua Brown come over to play.

We did our first "homework" for first grade last night. It's great to already see some improvement in Joshua's handwriting. Some of you know and understand the deficits Joshua experiences in regards to fine motor skills. We worked hard over the summer...seemingly to no avail. Then, one week of school and all of a sudden he's almost writing NEATLY!!! Go figure!

Bethany started 5th grade on Thursday. I believe she is going to have a great year. We are trying to place a new and higher emphasis on homework and excellence this year with her. It already promises to be a challenge, but one that is worthy of all I can give it. Bethany is an incredible young lady. I shake my head in amazement when I realize the potential I have responsibility for. Oh that God would help me be worthy of that responsibility!

Our ministry on campus, at Washburn University is in full swing. Last week, the students moved in and classes began yesterday. We have had several events and were totally "snowed" with everything last week. Our first Christian Challenge meeting is this Thursday. We are excited to see what God is going to do in the hearts and lives of college students in Topeka, Kansas. We continue to feel privileged to be a part of God's work.

When our pastor speaks to parents, he'll often remind them that they haven't been given children to care for, but souls to care for and be responsible for. I love that emphasis when I look at Bethany and Joshua. I also love that emphasis when I look at the college students at Washburn. What an amazing God we have, that would give us what we need to be responsible for souls. May we all be faithful to that end!

Thanks for taking the time to stop by and check in on Joshua. He's feeling great and is so happy! What a blessing to have him free of pain and experiencing life as a first grader.

I pray you find many blessings in the gift of today. May His sweet mercies astound you in life changing ways!

Astounded & Grateful,
Janene

Tuesday, August 16, 2005 8:03 AM CDT

Good morning wonderful friends!

Right now, Joshua is riding the school bus to first grade. He was so happy and excited to get on the school bus this morning...it was unbelievable! I've very seldom seen him so proud. I am glad we let him go on the bus, but I can't say it was easy. I have such a need to protect him...

First grade!!!! What a huge milestone today is for my son. He is here with us. He is a survivor. God has been gracious. We know nothing about tomorrow, but my heart is bursting because we've been given today. Today is such a sweet and special gift! I can't wait until 3:50 when I get a glimpse of the face of my first grader. I will again be reminded of what really matters in this world. Then we will celebrate!

Oh so gratefully,
Janene

Later update on Wednesday the 17th
First grade is a big hit with Joshua. He thinks Mrs. Lind is pretty and he thinks the bus is "very cool". He says he doesn't want to get picked up after school anymore and wants to ride the bus home. I think he's trying to grow up. Isn't that about the coolest thing!!!

Tuesday, August 9, 2005 4:47 PM CDT

Hello Wonderful Friends,

Joshua is doing great! He will be starting 1st grade a week from today. I can hardly believe the summer is over.

We continue to enjoy swimming and playing and of course playing and swimming. He spent the night at Grandpa and Grandma's house last week and enjoyed his time immensely. He also has enjoyed playing his friends Jonathan and Sarah throughout the summer and asks to play with them just about every day. We may try and take one more "fun" day trip yet before school starts. I have a sense of urgency to make special memories like never before. It's a facinating way to live.

Joshua continues to challenge me through the example he lives out before me. One of the ways he does this is by his compliments. Almost every day he will come up to me and say a long string of nice things. It will usually sound something like "you are a very nice mommy and I love you very much...you are beautiful, you are funny and you are a good cooker". The next day, he will usually repeat the gesture, but he will tell me something else he thinks is special about me.

The unique thing about Joshua is that the only motive he has for doing these things is to make me happy. He will often do the same for others simply to make them happy. He doesn't want anything, doesn't expect anything and the normal selfish motives most of us have just don't seem to exist much inside of him.

When he knows he has succeeded in making me happy, he walks away totally content. It is an amazing thing to watch. His outward focus truly challenges me. Putting others first describes him. I hope I am learning how to do that with those around me. I think God allowed me the privilege of being Joshua's mommy so He could teach me through him. I'm watching, I'm learning and I am grateful.

Thanks for taking the time to stop in and check up on Joshua. We count each day a privilege and we appreciate your continued support as we walk day by day.

Looking Up with Gratitude,
Janene

Sunday, July 31, 2005 10:17 PM CDT

Hello Everyone,

Bethany will be 1 week post surgery tomorrow night. Joshua will be 2 weeks post surgery on Tuesday morning. After we see Bethany's surgeon on Wednesday morning, we're going to the pool. All 3 of us are in pool withdrawl after all these surgeries:)

Bethany is feeling well. Joshua is feeling well. Things are good. Our summer is just about gone. I'd be sad about that, but I just can't be. On Tuesday I have the distinct privilege of enrolling Joshua in the 1st grade. How incredibly awesome is that??? I used to be so sad and mourned the passing of each year. I thought they were growing up so quickly and was sad to lose opportunities with them as they grew up and became more independent.

Things are different now. I marvel instead of mourn. I laugh instead of cry and I enjoy instead of "wish away". I am just so happy my son has the opportunity to attend 1st grade. I know many moms who never had the chance to see their sons attend 1st grade and I know beyond a shadow of a doubt that I am blessed beyond measure. Who knows what tomorrow may bring, so today and tomorrow and especially Tuesday, I will choose to celebrate...Joshua...1st grade...miracles...and hope!

Looking Up,
Janene

Tuesday, July 26, 2005 8:28 PM CDT

Hello Everyone,

Just when the hospital memories were fading...

We got a big surprise yesterday with our "usually healthy" daughter. Bethany woke up fine yesterday, but started having abdominal pain. I didn't think too much about it till she ran fever and I realized she was tender to my touch. I took her to the pediatrician and before we knew it, we were in the hospital preparing for surgery.

She had an emergency apendectomy at 9:30 PM last night and was back to her room about 11:00 PM.

Funny thing though, her appendix was not the cause of her pain. It was normal in appearance. Evidently she had "mesenteric adenitis" which is basicly swollen mesenteric (abdominal) lymph nodes due to a probably infection.

So to make a long story short, she didn't need the surgery, but she got one. She's feeling better, but is moving slowly and eating more slowly. We hope to bring her home tomorrow.

Being a cancer mom, I have been a little or maybe a lot concerned with the other possible causes of these enlarged lymph glands. I understand the possibilities, but am trying to focus on the probability of a normal infection and will watch her closely at this point.

After yesterday, I am again reminded of how much can change in a 12 hour period of time. That brings me back to the appreciation of "today".

"Today" I am grateful for another day together with my family. Yes, it was in the hospital, yes it was watching my daugter go through pain, yes it reminded me of many memories from our cancer past, but "today" was good. We were together, we had a purpose and we are blessed...truly, truly blessed.

Thanks for checking in.

Looking Up,
Janene

PS Joshua told me he wanted to be sick again. He thought the hospital bed, and handy dandy TV looked pretty good again. Oh how quickly they forget! Thank you Jesus!

Tuesday, July 19, 2005 3:59 PM CDT

Hello Everyone,

Well the last physical reminder of Neuroblastoma was removed from Joshua today. Yep, you guessed it. We finally got his medi-port removed which is a huge relief. Joshua did well with the procedure and was home by 3:00. He is sore and said "going to sleep" wasn't fun, but overall he made it through like a champ.

The only bummer is that he will need to stay out of the pool for 2 weeks to guard against infections. My Joshua fish won't like that one bit...but at lease we are done and will be back in the pool soon.

Thanks for your prayers on behalf of Joshua. We appreciate everything so very much as we continue day by day.

Looking UP,
Janene

Monday, July 18, 2005 12:13 AM CDT

Hello Friends,

Wow, what a busy week and weekend we have had. We had Bible school all last week and over the weekend, Craig and I went to Springfield for a wedding while the kids stayed in Melvern with Grandpa and Grandma. I'm happy for a quiet day today with not much on the agenda list.

Tomorrow morning we are scheduled for Joshua's Port removal once again. I'm keeping my fingers crossed and will be so glad if we can get it out finally. We've been trying since December and have had issues each time that have prevented the surgery from actually taking place. So, Joshua should be in surgery about 10:00 AM tomorrow morning if all goes well:)

This morning when I was explaining things to him, he was very upset. He was crying and very scared about being put to sleep again and having another surgery. After crying for quite a while while I was trying to reassure him, he set his chin, looked at me and said "I'm not going!" Now for those of you who know Joshua, you understand how uncharacteristic that is for him. I calmly explained that he had to get it out because the doctor said. He cried some more and then stopped suddenly. I watched as he started into space for about 30 seconds. After that brief period, he looked at me and smiled. He said "OK mom, I'll go. I'll be brave and not be scared". Then he ran off and played.

This experience really impacted me this morning. I saw a very visible example of God granting grace to Joshua that would allow him to handle what has to happen. I've always know that God gives us what we need to make it through difficult situations, but I've never watched Him do so in such an evident way. It was as if when Joshua paused this morning, God showered the grace He needed into his little soul. It was truly a most beautiful moment.

Thanks so much for taking the time to stop by and check in on Joshua. We would appreciate your prayers for our son today and tomorrow as we deal with this final surgery.
Have a wonderful and blessed week!

Looking Up,
Janene

Wednesday, July 13, 2005 5:15 PM CDT

Hello Friends,

Just wanted to write and say that Joshua continues to do very well. We have had a busy, but good week! I am teaching VBS and the kids are attending. They are having a lot of fun.

Joshua's medi-port surgery may happen next week. I'm waiting but not holding my breath. I'd sure like to get that thing out.

We're still swimming a lot! Both Bethany and Joshua are not tiring of swimming as much as possible.

I guess no news is good news for us at this point. We are enjoying the summer and hope you are as well!

Thanks for taking the time to stop by and check in on our Joshua.

Looking Up,
Janene

Wednesday, July 6, 2005 12:22 AM CDT

Hello Friends,

The official word is that all scans and tests continue to show no evidence of Neuroblastoma for Joshua! I finally heard the MIBG report today, along with the urine levels. I am pleased and incredibly grateful for additional time with Joshua!

Today, my family is coming through Topeka and we are taking a family picture out at the lake. I've been running around getting clothes ready and cleaning.

Tomorrow I will take Joshua to the dentist in KC to see how his teeth are holding out this far out of chemo. We are worried about his front teeth because we see no sign of them coming in and are wondering if they might not because of all of his treatments. I expect we may do some mouth xrays tomorrow.

Afterwards, we will meet Nette and the boys and go to Splash USA to let the cousins play in the water. It ought be be a fun day.

Let me take a moment to say thanks for taking the time to stop by and check in on Joshua. We appreciate your prayers and support as we continue this journey. We also appreciate your prayers on behalf of the friends we have made along this journey who are in the battle.

I know in my heart that God has a purpose for me to accomplish that is linked to the pain experienced through childhood cancer. I long to find out what it is and to pursue that purpose relentlessly. It puzzles me, but it also gives me hope. That's how I know it's a God thing!

Thanks for listening and for caring about our Joshua!

Looking Up,
Janene

Sunday, July 3, 2005 5:26 PM CDT

Happy 4th of July Weekend!

I hope your holiday weekend is going well. Joshua is doing well and we are enjoying the weekend.

Friday evening, we went to Russ and Marsha's house to shoot off some fireworks. Joshua actually was outside for the parachutes and smoke bombs and a few other quiet things. Then he quickly went inside to watch from the window. His fear of things like fireworks, thunderstorms etc. are getting some better, but he still has a ways to go. I enjoyed the rest of the fireworks by his side on the couch looking out of the window.

Yesterday I took both of the kids swimming and Craig took them to see "Herbie". They enjoyed both immensely and we both had some quiet time to get some projects done.

Tomorrow we will head down to Newton where we will celebrate my nephews birthday, as well as the 4th. My mom has a perfect "fireworks driveway" according to Craig and so Joshua and I are planning a "couch seat" with a window view to celebrate the 4th. It will undoubtedly be a fun day for all.

We expect to get the finalized MIBG scan report on Tuesday or Wednesday. With the holiday etc. it seems we wait and wait. We continue to hope all is well and that Joshua will be given the "all clear" until October.

While we are hopeful that Joshua will receive a good report, we are mindful of friends who are in the midst of incredibly difficult battles and find themselves fighting Neuroblastoma once again. Please remember Nathan and his family as he is currently receiving chemo and is going to have a head CT done sometime this weekend to rule out any other tumors. A link to Nathan's page is down below and I appreciate your prayers on his behalf, as well as for his family who is fighting by his side.

Grateful and Looking Up,
Janene

Thursday, June 30, 2005 2:17 PM CDT

Hello Friends,

We are done with scans until October as long as we get good MIBG results next week. We finished our MIBG marathon this morning and from my perspective, I feel like the uptake I saw today was only normal. We'll see next week if the radiologist agrees with my report Ha Ha!

Today in clinic, I received the printed reports from Joshua's CT and bone scan we did last week. All seems to be well and the only thing that seems to show up consistantly is some minimal damage to his left kidney. Nobody is concerned about that and so overall, we are breathing a little easier in regards to Joshua and cancer. The 4 of us will celebrate when and if we get the official word from the docs next week.

That being said, I ask that you lift up our friend Nathan who will be starting chemo tomorrow. He is one special little boy and I thank you in advance for lifting him and his family to The Father.

With Gratitude, but so many questions???
Janene

Monday, June 27, 2005 8:47 AM CDT

***Scan Update***
Dr. Watanabe called and said the CT and Bone scan are clean! Evidently the only thing that showed up was fluid on his ear drum from an infection. Now we wait for the MIBG, and may not be doing bone marrows until October. Evidently Dr. Kushner from NYC told Dr. Watanabe that he would recommend waiting until October. So, we'll know more later this week when we see what the MIBG scan report says. Thanks for your prayers on behalf of Joshua.

Good Morning Friends,

What a weekend it has been. After hearing of Nathan's relapse, my scan anxiety level popped up several levels. I was just plain "incredibly sad". On top of that, we had a horribly busy Sunday and I was going nuts cooking 2 meals for our college students, planning and having our first "staff" meeting and having Bible study last evening.

It all culminated last night and I had my ladies Bible study for some of our students. I had been peparing all weekend, but really struggled with it. Guess what the topic was on...JOY! I shared with the girls my weekend, my fears, my anxiety and basicly how I was letting my circumstances rob me of the joy that The Holy Spirit wants to show forth in my life. My prayer this morning is that God would fill me in such a way that joy is evidenced even on scan weeks. Even in the midst of very sad news, and even if we walk through the valley of the shadow of death. Honestly though...this is a tough one for me. It's just plain and simply tough.

On to this week...
Today we ought to hear Joshua's CT results and bone scan results. Craig also is trying to reschedule Joshua's bone marrows and medi-port removal with the correct sedation.

Tomorrow we go to KC early in the morning for the first day of our MIBG marathon. This one is the monster scan and the scariest one for me. While Joshua is scanned from head to toe, my eyes focus on the computer screen. The image of the little 6 year old I love dearly, slowly appears on the screen. Different spots "light up" normally and one is left to decipher whether or not there are any "new" or "abnormal" areas of uptake that are newly present since our last scan. I can't even begin to desribe what it feels like to see the image of Joshua on the screen before me. Even after 2 years of scanning and fighting, it still feels like it should be somebody else. But reality reminds me quickly that the image is Joshua and the areas of uptake mean life or they mean death. The moments are intense and the challenge we face is cultivating joy...real joy in our lives as we face a very uncertain future. He promises joy, peace, strength and all the things we so desperatly long for. The battle is in laying down our own desires and trusting His heart and His plan enough to let Him work. I've done it some, but I need to do it more!

Laying down some things I love,
Janene

PS Please keep Nathan and his family in your prayers. He and his family will be jumping into some new waters this week that are not easy. Your prayers for them are appreciated.

Friday, June 24, 2005 6:14 PM CDT

Hello Friends and Prayer Warriors,

I write this update with an extremely heavy heart this evening. Our friend from Colorado Nathan Gentry had his scans this week and his relapse was confirmed. He and his family are busy coming up with a plan to continue to fight this monster we call Neuroblastoma. Nathany and Joshua were diagnosed together, went through chemo and radiation together, had surgery in NYC together, had 7 rounds of 3F8's together and HAMA'd together.

As we look towards our upcoming scan results and our MIBG scans next week, the fear is rising and the reality is agonizing. Please lift up Nathan and his family as they pursue their fight. His web page is listed below. Thanks for lifting them up. It means a great deal to me.

Knowing God is bigger than pain and fear,
Janene

Wednesday, June 22, 2005 5:08 PM CDT

Hello Wonderful Friends,

Joshua and I traveled to Kansas City today for the first of many dermatology doctor visits if my best guess is correct. After his chemo and radiation treatments, I have started seeing many new moles suddenly appear out of nowhere. The one he had before has grown and changed and had me quite worried because of his past treatments and my malignant melanoma when he was born.

The doctor looked him over and isn't concerned at this point. They are suggesting the large mole be shaved off, but do not feel he currently has skin cancer. They did say that Joshua should be closely monitored. He is a high risk candidate for melanoma and other skin cancers genetically from me and treatment wise from radiation and chemo. Now I just have to figure out how to get his mole shaved without subjecting him to an office chair/you want to watch me cut your mole out? experience.

Tomorrow our horrid scans begin. We have a bone scan injection at 8:00 AM, a CT scan at 10:00 and the actual bone scan at 11:00 AM. We have to get there by 7:15 AM for the I.V. trauma and must stay NPO until after the CT Scan. UUGH! Next week we will have a marathon MIBG scan which will include one one Tuesday, one on Wednesday and one on Thursday. The reason that seems so awful to us is that at NYC Sloan Kettering, we only had to do one MIBG scan each round. It's amazing how different hospitals do things.

We were actally supposed to be scheduled for bone marrows and his medi-port removal surgery today. Somehow things got totally messed up and they scheduled him for the surgery in radiology. We didn't want that because that would mean he would have surgery under "conscious sedation". So, we are ending up having to reschedule his surgery once more. Sometimes I wonder if we'll ever get his medi-port removed.

That's about it for medical news. Bethany is spending this week at Children's Camp in Salina. She left on Monday and we will be picking her up Friday. I'm sure she is having a great time, but boy am I ready to see her on Friday.

Joshua's doing well...we just have to make it through these scans and see if we can get the all clear signal once again. God is in control and we leave our desires in His capable hands...trusting Him for the outcome.

With Hope,
Janene

Sunday, June 19, 2005 2:19 PM CDT

Happy Father's Day!

I hope all of you dads are having a great day! I want to wish a special Happy Father's Day to 3 very special dads who have impacted Joshua's life and all of our lives, on this very special day.

First, Happy Father's Day to Grandpa John! We are so blessed to have a dad and grandpa like you. Your ability to put the needs and desires of those you love "first" is remarkable. Your commitment to your family sets an example to us all. We love you more than we can say. Thanks for your steadfast love that has been a rock as we have traveled through difficult times.

Next, I need to wish my dad "Happy Father's Day". Although you now resides in heaven dad, the impact you have had on us will never grow dim. As we have walked through these last few years, I have often wished for your encouragement and support. You would have cried with us, and cheered with us. You would have been there for us and would have hugged me when I needed it most. You always made things better, and oh how I have wished you were here to do that for us.

Through your death, I ended up learning more than you could ever teach me here on earth. As I watched your entrance into heaven, I learned what I would later need to know. I learned that dying isn't something to fear when you have a personal relationship with Jesus. It is only the start of a glorious eternity. I did "know" that before you died, but living it, helped me "know" that in my heart. Little did I know then, that I would have to face that reality with Joshua. Yes, he's doing great now, but you know me...I always have to face the possibilities so I know how to get through them.

Most importantly, I want to wish my Craig a Happy Father's Day. Craiger...what can I say?? Your commitment to me and to our family has only grown since March 21st of 2003 when our lives changed forever. As I have watched many dad's not be able to handle the stress, I have seen you plant your feet in the ground, all the while promising that we can do this together. You continually challenge me and encourage me to "keep looking up"! You don't just say you "trust God"...you live it before us each and every day. You are a treasure in this life that I have been blessed with. I tell Bethany and Joshua often that they were given the best daddy in the world. We love you and are so incredibly blessed to be living this life beside you. Eternal thanks Sweet Husband for all you do and who you are! Happy Father's day!

Love,
Janene

Thursday, June 16, 2005 4:49 PM CDT

Hello Wonderful Friends,

Well yesterday was nice! We unpacked and did all the catch up things you do when you get home. The kids put all of their memories away in their rooms and overall it was just a good day.

...where do I begin?

We got up last Thursday around 4:00 AM. We had a non stop flight to Orlando and left our car at The Parking Spot which is a parking company we've never used before close to MCI. Make a wish had arranged for free parking for us, which pretty much prepared us for the rest of the trip. Make a Wish took care of everything. The little details were amazing and very much appreciated.

The flight was good, except that I was sitting next to a very anxious 6 year old boy named Joshua. He was wiggling and squirming and extremely impatient to land. It surprised me because he usually is a wonderful traveler and will sit for hours playing his gameboy. I'm quite sure that he was the happiest person on the airplane when we landed.

Our volunteer met us at the baggage area. Her name was Bert. She was a wonderful person who was a retired pediatric nurse. She had recently spent 8 years in Uganda on a medical mission experience and her love for kids was so evident. When I explained about our ministry at Washburn, she made an interesting statement. She said "I could tell you knew Jesus when we first met, because I looked into Joshua's eyes and could see he had been touched by God." She was just one of the "gifts" we received on our trip to Florida.

Bert helped us get to the Rental place and our car was pretty much waiting for us. Craig had to sign a paper or two and before we knew it Bert was telling the kids to pick out any car in a particular row. Bethany and Joshua loved that and ended up picking a bright red Monte Carlo. Joshua said he didn't want to fly home, but he wanted to drive the red car all the way home to Kansas:)

When we got to the Give Kids The World Village, we checked in and it was very evident that Joshua was a VIP. He received a Mickey Mouse and Bethany received a Shamu she quickly renamed "Flower". While Craig went through orientation, the kids and I saw the Village. The Village is truly a kids dream come true. The kids can ride a carousel, ride a train, play games, fish, swim eat ice cream sundaes, watch movies etc. and so very much more. It really took us the entire time to see all of the village. The kids kept finding new treasures and loved every minute we spent there.

Thursday evening was Christmas at GKTW. Santa Claus came, they made snow, the kids got presents etc. It was a good start to a great week. We did get to our Villa on Thursday afternoon and the kids set up their room just the way they wanted. We even had an hour or so to swim.

Friday we woke up and went to Magic Kingdom. Our day at Magic Kingdom was great. I will write more later and continue this update with our time there. There's just too much to write.

Friday continuation...

The kids really enjoyed Magic Kingdom. The hilights for Bethany were Cinderella's castle and a space ride. The hilight for Joshua was the afternoon parade. He sat on Craig's shoulders and saw all of the characters go by and was very pleased. We did not stay for the evening shows since we were tired and Joshua does not like fireworks. I'm sure they would have been spectacular.

Saturday we ended up going to Epcot Center and MGM Studios. Epcot was wonderful...very non busy and cool due to several showers. The ride hilight for all of us was "Soarin". It was a theater ride that simulated us flying over different parts of our country. It was wonderful. The other hilight for Joshua was greeting the characters. We were in "Japan" at Epcot and all of a sudden a double decker bus drove up with all the characters. Joshua was one of the few children around and got to take pictures with almost all of them. His GKTW button helped him several times because he got taken to the front of the greeting lines. He loved every minute of it.

MGM was great, but it really rained for most of our time there. We did see the "playhouse disney" show where they treated Joshua like a VIP. That was the hilight without a doubt. We also ate at the pizza parlor in "Toy Story" and almost saw the power rangers. The parade they were in got cancelled at the last minute due to rain. I think the kids would have enjoyed MGM immensely if it hadn't been raining.

Sunday we went to Universal Studios and the Universal Studios Island of Adventure theme parks. The kids both loved Islands of adventure. Joshua got to meet Spiderman, Wolverine, and Captain America. Bethany loved camp Jurassic Park...especially a treehouse play area that was really cool. Dr. Seuss land was also a favorite for all of us.

Universal Studios was also very fun. It was extremely hot by that time, but the kids area had a Curious George Water Town that was second to none. The kids both were soaked from head to toe until we got home. They had soooo much fun.

Monday we debated and debated and finally decided to take the day off. Both kids wanted to stay at GKTW and swim. So, that's what we did. We had an absolutely amazing day. It was a great way to end an amazing trip. The pool party that GKTW put on in the evening was a blast and the video footage we got there will be memories for me that are too priceless to even begin to explain.

Without a doubt, it was an amazing wish trip of a lifetime. Joshua talked several times about how happy he was that he got his wish. I was thrilled to be along for the ride.

That's all for now. Thanks again for taking the time to stop by and check in on Joshua.

Love,
Janene

Tuesday, June 14, 2005 10:53 PM CDT

*New Pictures Added from Florida!

Hello From Home!

We are home and glad to be here:) We had an incredible trip to Florida and have much to share. I'll update more soon, but wanted to let you all know that Joshua is feeling great and he had an amazing time on his Make A Wish trip.

With Gratitude,
Janene

Wednesday, June 1, 2005 5:37 PM CDT

Hello Friends,

Just wanted to write a short note and say Joshua is doing well. He is loving Summer and wants to swim every day! Next Tuesday our Make A Wish coordinator will be coming to our house to make the final preparations for our Thursday morning departure for DisneyWorld. The kids are excited and we are getting set for a great time. We are determined to make the most of each moment because scans are coming soon and we understand how uncertain our tomorrows may be. Thanks so much for taking the time to stop by and check in on Joshua. Your continued concern and ongoing prayers mean a great deal to us along this journey.

With Gratitude,
Janene 4 all of us:)

Sunday, May 22, 2005 6:25 PM CDT

Hello Wonderful Friends,

What a week it has been. Joshua finished school on Thursday and Bethany on Friday. If that weren't enough, we celebrated Bethany's 10th birthday Thursday evening and at school that day. It really was a wonderful week filled with glorious milestones that I am incredibly grateful for.

Joshua is feeling pretty well. He has had a few complaints of stomach pain which of course send the usual waves of panic throughout this mom...but all is fairly normal at this point and today he hasn't had any complaints. He has huge amounts of energy and requires less sleep than me it would seem. The other day at Walmart, he was holding my hand in the parking lot while he was running. I was tired and lagging behind and he was trying to pull me faster. I had to smile as I remembered the weeks and months of him barely being able to walk. This child pulling strongly on my arms to go quicker used to be confined to a stroller to go any distance. What a joy it was to see him feeling so well and laughing so often.

Last week Joshua received a postcard from Mickey Mouse himself. Apparently Mickey is waiting for Joshua's arrival and is pretty excited about it. We will be leaving on June 9th and returning on the 14th. Make A Wish is amazing and I can't wait to see all they will do for Joshua. I have watched several of our close friends go to DisneyWorld with Make A Wish and I know it will be memorable to say the least.

When we return home, we will have 2 weeks of scans UUGH! Joshua's surgery and bone marrow procedures are scheduled for the 22nd and numerous scans for the 23rd. Then we will do the infamous MIBG scan the KC way which will take up 3 days of the next week. I'm just glad we can go to Florida and then worry about all that junk.

We have a little friend named Daegan here in Topeka who is battling Leukemia. He recently found out he has relapsed for the 2nd time and will soon be finishing up his well fought race here on earth. My heart aches for them as I know they are experiencing the thing my soul fears most. Please pray with us for Daegan and his family as they walk this most difficult journey through the valley of the shadow of death. His web page is www.dmanhero.com

That's about all the news I have for now. I am anxious and excited for this Summer and the opportunities I have to spend with my treasures. Both Bethany and Joshua are such incredible little people with the gifts and hearts to change the world. I pray this Summer might provide each of us what we need along that journey that we might glorify the one who made us and has called us!

Thanks again for stopping by to check in on Joshua. We love you and appreciate your continued prayers on his behalf.

Grateful for the journey,
Janene

Tuesday, May 17, 2005 4:17 PM CDT

Hello Everyone,

I hope you all are doing well! Thanks for taking the time to stop by and check in on Joshua. He is doing well with only 2 more days left in kindergarten.

He is toying with a little bronchitis like something and is couphing and blowing his nose again, but hasn't run a fever yet. Keep your fingers crossed that his ear tubes are still in place and doing their jobs. We're hoping to avoid this turning into an ear infection and perhaps another tube surgery.

Yesterday was beach day at kindergarten and today was camping day. This last week is basicly one big party so he is excited every day. He continues to love school and is looking forward to being a 1st grader.

Big sister Bethany will turn 10 on Friday this week. She is thrilled at the prospect of her coming birthday and even gets to go camping to celebrate. She says it will be the best birthday of her life. Mom hopes so too:)

Last week was a week of programs. Joshua had his school program on Tuesday, they both had their AWANA recognition on Wednesday and Bethany had her school program on Thursday. We were busy non stop all week, but it was a very good and normal busy which I don't mind at all.

Joshua's kindergarten program was very special to me. I want to share part of a song they sang that was meaningful to me.

Fingerprints
I've heard that where your treasure is
that's where you're heart will be.
I don't know much about hearts and things,
but I'm glad you've treasured me.

I wanna make great fingerprints,
but I promise not on your walls.
I want to touch those around me,
though I'm only 3 feet tall.
Well, I know it's hard to believe,
but once you were a kid like me.
I know I'm going to grow up.
So remember me while I am small.
But someday I'm going to grow up,
so remember me while I am small.

Joshua's fingerprints are all across my heart! I could never even begin to explain the impact he and the monster he fights, have had on my soul. My heart leaps as I dare to hope that he will have the opportunity to leave many more fingerprints on the lives of those he comes into contact with for many more years. No matter what though, the fingerprints he has left on my heart will give me purpose and hope throughout all of my years.

And yes, sweet boy...you are my treasure! Thanks for marking my heart forever. I Love You Joshua! Mommy

Thankful for each day of fingerprints,
Janene

Monday, May 9, 2005 11:35 AM CDT

Good Morning and Happy Monday!

I hope you all had a wonderful weekend and that all you mom's had a great Mother's Day yesterday. We had a good weekend, although a busy, busy one.

Saturday we celebrated Mother's Day in Melvern with Craig's mom and Sunday we celebrated in Newton with my mom. All in all...we had a great time. Joshua wasn't thrilled with all the rain all weekend, but he was fine.

Not much news to report on this end. The kids have this week and next week and then Summer. Bethany is excited because her birthday falls on her last day of school a week from Friday. We're still debating about her birthday party.

Joshua's getting a cold again, but is feeling well. I'm hoping he won't get too sick during these last 2 weeks of school.

We're doing well. Thanks for stopping by!

God bless you and Have a great week.

Love,
Janene

Wednesday, May 4, 2005 9:26 AM CDT

Good Morning Wonderful Friends,

Joshua is doing great these days and life has developed into a new "normal" for our family. It is a gradual change, but one I am indeed thankful for.

In 2 weeks, Joshua will be officially finished with his kindergarten year. What a miracle that accomplishment is. He is excited about next Tuesday because he will be singing in his Spring Program. Each day he tells me his program is tomorrow.

I've been trying to explain Summer to Joshua and moving onto 1st grade. He's excited about it and has been asking lots of questions. I can't believe I am planning for my son's first grade year. I am so grateful to God for allowing these opportunities for our family to experience together. He has been so very good to us and for each day we have together, I am thankful.

The other day, Joshua came to me and said "Mom, I'm all better!" It finally hit him that after having months and months of cold and flu symptoms, he was FINE! He was excited and I again am grateful.

Last week I had the opportunity to speak for a group of ladies at our church. I was asked to share about the last 2 years with Joshua. This was the first time I had done so publicly and I had so much fun. It was a challenge for me to communicate all of the incredible things God has done throughout our journey. I am excited to do so again and am challenged greatly to communicate these things in a way that brings God the honor only He deserves.

Medically speaking...we need to reschedule his medi-port removal. We also need to schedule some scans for June after we get back from DisneyWorld.

I'm overwhelmed this morning in gratitude. These weeks are wonderful weeks where Joshua is feeling great, sleeping great, eating great and laughing and smiling constantly. We are so incredibly blessed that it almost hurts. As usual, tomorrow isn't promised, but the treasures of today remind us that God is walking with us and will continue by our sides no matter what tomorrow brings. How cool is that?

Thankful for my walking partner,
Janene

PS As I went through all of my writings in preparation for my talk last week, I ran into memories and more memories. The following is a poem I wrote during one of the initial chemo treatments Joshua received at KU Med Center. As I lay beside him and watched him go to sleep one night, I wrote the following...

Peace
You look so peaceful laying there tonight.
How could this monster be raging inside you?
Oh my son, you are a gift.
More precious than the riches of this world.
I would give the world to make the suffering end
For peace to reign in our lives once more.
But, as I ponder, I see the peace only few know.
It is all around you my Joshua.
You are my living example of peace, hope and strength.
For when I look at you I see Jesus
walking beside you, holding your chin high with steadfast determination
He is your peace...and mine too
as I watch you go to sleep.

Sunday, April 24, 2005 4:25 PM CDT

Hello Everyone,

Well, the weekend is winding to a close. Joshua is finally feeling better and will hopefully head back to school early tomorrow morning.

We had a good weekend. Joshua walked his first survivor lap in the Washburn Unviversity Relay For Life. He was so very proud and actually walked the entire lap in between the 2 people who had been asked to lead. He beamed and beamed when we cheered for him. He gave Bethany a high 5 and was just plain and simply...thrilled to participate.

With that said, I do want to remind everyone that Relay For Life is a wonderful fundraiser for some cancers. I love the emphasis on hope and the pagentry they use to make a very memorable evening. Sadly, the money raised from Relay For Life does not go towards Neuroblastoma at all. Very, very little of the overall funds raised go towards other childhood cancers, but Neuroblastoma is not one of those. So, if you participate, do so in memory of an adult you know that has battled cancer. That is who benefits from this unique fundraiser...not Joshua and not the many other children struggling and dying from this horrible, monstrous disease.

In other news, we are down to the final weeks of school at Washburn. Our ministry will soon be wrapping up for this year. We praise God for all He has done this year at Washburn and in our lives. He continues to teach me about trust and submission to His will. He continues to ask me to be obedient, and He continues to provide the strength, peace and hope I need so desperately as we continue down this road.

Thanks so much for taking the time to stop by and check in on Joshua. We appreciate your continued prayers on his behalf. I pray the coming week finds you looking towards the one who is the very peace we need for today.

For His Glory,
Janene

Monday, April 18, 2005 10:42 AM CDT

Good Morning and Happy Monday!

Joshua's home with me today. He hasn't been able to shake whatever is going on inside him so we are vising Dr. Patrick this afternoon. He has had several fevers and his cough and sore throat are lingering. Other than that, he's doing fine.

On Friday evening Aunt Nette came to watch the kids and they rented Luigi's Mansion at Blockbuster. Since Joshua wasn't feeling very well this weekend, we've been playing and hearing a lot from Luigi and his friends.

That's my short update for now. I hoope you have a great week. It looks like it will be a beautiful one.

Love,
Janene

Wednesday, April 13, 2005 9:07 AM CDT

Good Morning Wonderful Friends,

Well we aren't in surgery this morning!!! Joshua developed a cold and cough and a slight fever a few days ago. The sedation team voted to postpone the surgery for a few weeks. Joshua stayed home from school yesterday, but went back today. I hope he can shake this cold quickly and that we can get his medi-port removed. We've been trying since the last part of December, but it just hasn't worked for various reasons.

Besides that, Joshua has been doing fine. We had a busy weekend which he enjoyed immensely. On friday night we attended our nephew's wedding and on Saturday and Sunday went to Newton to help my mom celebrate her birthday. We had a great time!!!

That's the news for now! We'll be rescheduling his surgery soon and are really looking forward to Joshua's make a wish trip to DisneyWorld in June.

As always, thanks for taking the time to stop in and check on our son.

Our Love,
Janene 4 all of us

Thursday, April 7, 2005 8:26 AM CDT

Good Morning Everyone,

Today Joshua is officially 6 1/2! I didn't use to celebrate half birthdays, but am adopting quickly the philosophy that we must celebrate any chance we have. Every chance we have to celebrate together as a family is indeed precious and will not be overlooked!

Joshua continues to do well for which I am so incredibly grateful. He has had a busy week and is well! I don't think he even has a runny nose. We haven't seen that in months. On Monday, we did start the dreaded re-immunization process for Joshua. He has to repeat all of his childhood immunizations now since his transplant wiped out the ones he had when he was a baby. So...5 shots were in order after school on Monday. Joshua was a trooper, but mom didn't care for the entire process at all. Now, we just have 4 more sessions of shots. Uugh!

Joshua has tomorrow off from school, but it has been great having him have a week without a day where I have to keep him home.

Last night was pajama night at AWANA. He had so much fun going to church in new Spiderman pajamas and slippers. He is very close to finishing his handbook and memorizes scripture almost effortlessly. It has been a joy to watch him grow in that area.

Yesterday morning on the way to school, Joshua asked me how long Jesus was going to stay in his heart? We had a great conversation about Jesus staying with us forever after we have asked him to come into our lives. He also started asking questions like "If Jesus lives inside me, will He start liking the things I like to do...like Gameboy?" That lead to another great discussion about when Jesus lives in us, we become like Him instead of Him becoming like us. I absolutely love talking to my son about his view of God. It is a beautiful and very simple view of the God who made him. When I hear his questions, I can see God working inside his little heart and soul...transforming Him into His likeness. Cancer holds no relevance as I watch this transformation. And for that...I am grateful.

Medically speaking...Joshua's surgery to remove his medi-port has been scheduled for next Wednesday morning. So, if he stays well, we will finally be "central line" free in a few days. That will be a milestone we may just have to celebrate!!!

We also have scheduled a visit with a pediatric dermatologist in KC. Joshua is developing moles on his abdomen that need to be monitored by a dermatologist. This is a late effect of the radiation treatments he received. Several of the moles are very dark and just appeared overnight. The one that has always been there is growing in diameter. Since those are the warning signs of skin cancer and since he is at risk for developing skin cancer, it is time. Unfortunately, their first available appt. is in June. We will keep that Appt. unless we see changes in between now and then.

This is a busy time of the year for our family. The school year is winding down and we are tying up loose ends with our college ministry while starting the planning process for next year. We are excited about some new opportunities at Washburn God is providing.

Bethany's exciting news is that she got glasses yesterday for the very first time. She is excited about them and loves the ones she chose. I am hoping she is still excited about them when I pick her up today. I'm sure she'll have to deal with a few mean kids and a major headache as that was already starting later last night.

That is just about it from the Freerksen News & Report. We do appreciate you taking time to stop by and check in on Joshua. We will be doing his next set of scans in June after his Make A Wish trip to DisneyWorld.

All is well in Topeka!!!
For His Glory,
Janene

PS
Bethany came to us with a great thought this week. We had her write it down. It goes something like this:

"I shall breathe my last breath
And I shall say my last words
But I will never, sing my last praise!"

I pray her words are true in my life and in yours!

Wednesday, March 30, 2005 8:52 AM CST

***New Pictures added this morning***

Good Morning Wonderful Friends!

We are finally home! It feels like we have been gone for an eternity. We had a wonderful trip to Colorado with 23 of our college students. We had our annual Spring Break Conference in Buena Vista and had a wonderful time. Joshua and Bethany both loved swimming outside while it was snowing in the hot springs pool.

From snow in Colorado, we came home and flew to visit Uncle Lee and Aunt Jany who live in the Florida Keys. We had a wonderful visit with them in their "tropical paradise". The weather was close to 90 degrees and the kids loved the beach incredibly. They both could of stayed a long, long time. Thanks Lee & Jany for everything. We're already talking about "next time"!

Joshua was glad to get home and felt good the entire time we were gone. We had one "weird" fever, but it only lasted a few hours and then he was good to go. We will be scheduling a clinic appt. in the next few weeks to flush his medi-port. We will also be planning his medi-port removal soon I hope. Besides that, we're looking at scans in June. We're planning on scheduling them during the later half of the month...after Joshua's make a wish trip to Disney World.

Thanks so much for your continued prayers for Joshua. Please continue to pray for our friend Nathan. The questions about a possible relapse continue and the agony and stress they are experiencing is such a huge load.

Have a great day today! Know that you are loved intensely by the One who made you.

Because of His love,
Janene

Friday, March 18, 2005 2:53 PM CST

Hello Wonderful Friends!

Joshua is doing great and we are packing for Spring Break. We will be leaving with our college students for our annual Spring Break Conference early early tomorrow morning. We are thankful that Joshua is feeling well and that the rest of us are well, so that we can take this trip to Colorado together.

2 years ago, we weren't able to go to Colorado because we were in the hospital waiting to hear what type of cancer Joshua had. Last year, Joshua and I were in NYC for treatment while Craig and Bethany made the annual trip with our students. So, this year is extra special for us. We will be staying at The Young Life Camp named Frontier Ranch which is located near Buena Vista, CO. We will be returning late Wednesday and will be home Thursday packing for an early morning departure to Florida to see Uncle Lee and Aunt Jany.

The kids are excited and I will be once we are on the road. As usual, I have too much to do and have to get at least a little sleep. Craig and Bethany will be skiing one day with our students and the rest of the time they will be playing with our friends from KSU. It should be a great time for everyone.

Thanks for checking in on Joshua and for your continued prayers on his behalf. Another one of our friends named Nathan Gentry also needs your prayers at this time. Nathan was diagnosed a few weeks after Joshua and pretty much went through treatment with us. At this point, Nathan and his family are looking at a possible relapse and are spending a very long and scarry weekend waiting for scans and results. A link to his web page is down below. Please drop by and write them a note of encouragement as you lift them to The Father. Your prayers on their behalf would mean a great deal to me!

Thanks Again,
With Hope,
Janene

Thursday, March 10, 2005 4:18 PM CST

Friday Breaking News***Bone Marrow Results are In!!! No evidence of Neuroblastoma!!! Thank you Jesus!

______________________________________

Hello Wonderful Friends!!!

Our home has been a bit of a sick zone lately. Joshua has been home the last few days with a fever and bronchitis like symptoms again. I have been sick since Monday and Craig came down with the stomach flu last night and managed to give a little of that to me as well. When Bethany got up this morning to a very sick family, she started crying and said "I want to go to grandma's house". She really doesn't want to get sick.

I think by now, we are all on the mend. We did decide to change our trip to Florida since we were scheduled to leave tonight and fly very early out of Wichita. We decided that Uncle Lee and Aunt Jany probably didn't want whatever we have, so we will try again over Easter weekend. Hopefully we can get everyone well at the same time, which seemingly is no small accomplishment.

I still don't have any word about Joshua's bone marrow aspirates or biopsies. I'm assuming the first test came back negative and they are waiting for the results of the sample they send off before calling. I'll probably call tomorrow since we will be home.

That's about all the news I have for now. I'll update more when we get bone marrow results. Until then...thanks for your prayers and support.

Love,
Janene

Friday, March 4, 2005 11:03 AM CST

Good Morning and a Very Happy Weekend to each of you!

I have glorious news to report to you today. After a busy week of scanning, Dr. Watanabe shared with us this morning that Joshua's MIBG scan and CT are clean! We'll hear about his bone marrows next week, but we are so happy to hear the news about his scans after weeks of questions and uncertainties. Dr. Watanabe was very encouraging and feels like Joshua is doing great.

I cannot even begin to describe the joy that overcomes my soul and our entire home when we get news like this. We have been given the gift of time, and that is indeed precious. So, today we will celebrate. We will celebrate...mindful that we are fast approaching the 2 year mark of when Joshua was diagnosed with cancer. March 14th was the day Dr. Vansickle found Joshua's "mass" and we were admitted to KU Med Center. March 21st was the day we heard our son had Stage 4 Neuroblastoma. Now, 2 years later, we are simply "blessed".

We continue to be incredibly grateful for each of you who continue to support, pray for and encourage us as we continue down this path. Thanks so much for all you do, and for taking the time to stop by and check in on our son,
Joshua Michael Freerksen...Stage IV Neuroblastoma SURVIVOR!

With Gratitude From The Rooftops,
Janene

Wednesday, March 2, 2005 8:29 AM CST

Psalm 31:14&15a
But I trust in you, O Lord; I say, "You are my God." My times are in your hands;"

Good morning wonderful friends!

This morning Joshua and I are headed to Kansas City to Children's Mercy for the 2nd day of his MIBG scan. Craig went with him yesterday and Joshua did a good job dealing with the I.V. and scan. Today, the scan will be long, but I'm confident Joshua will do as well as he usually does.

My eyes will be on him today, but also on the computer screen. As Joshua lays on the scanner bed, the scanner begins with his head and works it's way to his toes. As it progresses down my son's body, the image of Joshua slowly appears on the computer screen. My eyes will be watching for the spots that "light up". Since Joshua's CT scan several weeks ago produced some questions, the scan today is extremely important for us to understand if he is free from Neuroblastoma or not.

So, the future continues to be quite fuzzy. As usual, I just know that we have today. I am grateful for that gift, no matter what the scanner shows today. Today brings a vivid reminder that "our times are in His hands". I pray you will be reminded of that as well and live today in the comfort of the blessed “whatever.”

In His Grip,
Janene

PS Joshua has been feeling great and is happier than anyone else I know. He's sleeping well, playing hard, learning a ton and laughing more! He is a treasure and such an incredible joy in our lives.

Wednesday, February 23, 2005 7:59 AM CST

Good Morning!

All is well for Joshua these past few days! He is pretty well, with some stubborn "cold symptoms" hanging on. He had a great weekend because daddy took them to swim at the YMCA. Joshua loves that place and spent a great deal of time under the water where fishes are happy. This Summer, he would love to take swimming lessons, and since he is doing so well on his own...we'll probably take him up on that.

Joshua's MIBG scans are scheduled for March 1 and 2. On March 4th, we will go for bone marrow biopsies and aspirates. After that week, we will have a better idea of where we stand. The good thing is that Joshua isn't having any pain and is enjoying each day to the fullest. We are hoping these tests will confirm our desires of "no evidence of NB". If so, we won't scan until June again. That sounds wonderful to this mom.

After all these medical questions are answered, we are going to be traveling a little. We are planning to visit Craig's Uncle and Aunt who live in Florida over the 2nd weekend in March. Then, during Spring Break, we will travel with our college students to Buena Vista, CO for our annual Spring Break Conference called "The Summit". Then, later on in June, we'll leave for Disney World for Joshua's Make A Wish trip. The kids will love every minute of each of the 3 trips, and Craig and I are very grateful for the opportunities.

That's about all the news I have from our home to yours. Thanks for taking the time to stop by and check in on our son. We appreciate all you do.

With Love & Gratitude,
Janene

Wednesday, February 16, 2005 9:17 AM CST

Good Morning!

Joshua is doing pretty well! He is back to school today, and hopefully will be able to shake the last part of his upper resp. infection soon. His eyes are clearing up nicely with the eye drops and his ears continue to drain. If he didn't have the tubes in, we'd just have one constant ear infection and I would guess...very poor hearing. Thank goodness for tubes:)

Joshua's MIBG scan is scheduled for March 1st along with his bone marrows which had to be changed when he had bronchitis. Now, the challenge will be to get him well enough for all those tests to happen. Oh, I'm ready for Summer!!!

Thanks again for taking the time to stop in and check up on Joshua. We appreciate your prayers and your encouraging notes more than we can communicate.

With Love & Gratitude,
Janene

Monday, February 14, 2005 8:34 AM CST

Good Morning & Happy Valentines Day!

It is with a heavy heart this morning that I write this update. Joshua Young, our friend and fellow Neuroblastoma comrad, went to be with Jesus just a few hours ago. He fought a courageous battle and had an incredible impact on so many lives. I felt a special connection with his mom Christine because we each had a "Joshua" fighting this disease. A link to his page is down below. Please pray for Jamie, Christine and Joshua's big brother Travis as they endure these days and walk this road. I can't even fathom their pain and can only pray that God's stength and peace will astound them in this incredible time of need.

My "Joshua" is sick again. This morning we're headed in to see his pediatrician with Pink eye, an ear infection, 102 fever, throwing up etc. I'm not sure what he needs, but am hoping we can get some help.

I'm also expecting to hear today when his MIBG scan is scheduled for. The main issue is that he needs to be fairly well for that scan, since he must lay still for so long. But, one day at a time for now:)

I think that's the main news for now. Joshua sends Valentines Day hugs to each of you. Thanks so much for taking time to stop by and check in on him.

With Love,
Janene

Wednesday, February 9, 2005 9:57 PM CST

***New Pictures on the picture page!!!***

CT Report Update!!!! Dr. Watanabe thinks Joshua is fine. He said that the pattern of his enlarged lymph glands would signify infections verses tumor presence. He stated that the lymph nodes that usually are larger when there is tumor present were the only nodes that were normal. The radiologist also saw other signs that would signify infection and the "normal crud" that Joshua has been experiencing verses Neuroblastoma. We will be scheduling an MIBG scan to "err on the side of caution". So, in summary, we still don't have the all clear sign, but we sure are smiling after that phone call. I told Craig this morning that if Joshua has relapsed, he is the happiest, wellest child I've ever seen with Neuroblastoma. He just looks too good to be sick. At least for now, that's my story and I'm sticking to it.

Thanks for your prayers for Joshua. God's peace has been surrounding our home as we have waited these past few days and with humble, grateful hearts...we say thank you Jesus!

From an Oh so happy Mommy,
Janene 4 all of us

Hello Everyone!

We still don't have any word about Joshua's CT Scan. Our NP has been out of the office since Monday and our doctor will be back from vacation tomorrow. We're expecting to hear from him tomorrow and get the faxed report. It's been a bit frustrating not getting the report since the scan was done a week ago tomorrow!

Joshua is feeling great these days for which we are grateful. The last few days have reminded me yet again how each minute, hour and day should be treasured with those we love. So, for tonight...my heart is just filled with gratitude. I'm eternally grateful for the 2 gifts God has given me who are asleep in their beds down the hall. If we are granted a "tomorrow together"...I vow to love them wholeheartedly, serve them endlessly, laugh with them joyously, play with them continually, teach them diligently, pray for them earnestly, and walk beside them encouragingly.

That kind of gift deserves that kind of purpose, and I will be ready.

In Hope,
Janene

Monday, February 7, 2005 4:59 PM CST

Hello Friends,

Well, as expected, we have questions after receiving some of Joshua's scan reports from Childrens Mercy in Kansas City. The good news is that his bone scan was clean and his VMH/HMA Urine levels were in normal limits. The questions come with his CT scan.

The preliminary CT scan, which I haven't seen yet, shows enlarged lymph glands in Joshua's neck and abdomen. Our nurse practitioner called to explain that we may have some concerns, but we will have to wait to verify whether these concerns could mean relapse. We should be able to get a printed copy of the final CT report tomorrow or Wednesday, and then Thursday, Dr. Watanabe will be back from vacation and will be able to look at the scan with the radiologist to tell us what his opinion is. I could tell she was concerned about the glands in his abdomen, but could not read her to know what she really thought.

Our plan, at this point, is to hope tomorrow we can get a faxed CT Report so that we can read for ourselves what the radiologist saw. We should know by the wording they use how concerned they are. Depending on Dr. Watanabe's opinion, we could likely have the scans fed-exed to Sloan to seek Dr. Kushner's opinion as well.

All in all, we know very little. This could be relapse and it could be nothing. We are not without hope, as the one who embodies our hope has been and continues to be by our side. Without that assurance, I couldn't even pretend to function.

Thanks to each of you for checking in on Joshua and for your continued prayers as we continue down this path.

With Hope,
Janene

Thursday, February 3, 2005 9:29 PM CST

Hello Everyone!

Today is a special day for me! Today my dad would have been 65 years old. I suppose in Heaven, earth birthdays don't mean a whole lot, but today is special for me here on earth because of the impact my dad had on my life in the 59 years he was here.

One of the most important things that my dad taught me through his life is that God is sovereign and He has control. The only thing in my hands is the choice I have to trust Him or myself. My dad was a person who made a deliberate choice to trust God. I am thankful that I had the opportunity of watching him trust over the years. His example is one I remember often as I face the daily decision of leaving Joshua in the hands of God.

Thanks dad for showing me years ago how peace comes through trust and that trusting God is the only way to live. Thank you God for allowing me to see a true example of trust to prepare me for such a time as this!

Medically speaking...I'm glad today is over. Joshua and I got to KC bright and early this morning after way too little sleep. Our schedule went kind of like this...
-Chest XRays and Spinal XRays
-I.V. Insertion for Bone Scan injection
-Drink CT Scan Contrast
-CT Scan
-Snack
-Bone Scan
-Clinic Appt. for blood labs and urine collection
Joshua was a trooper. I think he would be fine with the whole I.V. thing if they didn't have to use the rubber band around his arm. He hates that perhaps more than the needle. The contrast went down easier than last night for which I was grateful. The bone scan went easier than I expected as well since they had a TV in the room which he could watch for about half the scan. He held reasonably still and I was again very proud of him.

We should start hearing results tomorrow and will probably know everything by next Tuesday when we go back for bone marrows and his medi-port removal. I was relieved that the day was over and finally realized that the stress of "doing scan day" is equal to the stress of waiting for the results.

Thanks so much for your prayers. We appreciate you taking time to stop by and check in on our son. I'll update more when we have news.

Trusting,
Janene

Wednesday, February 2, 2005 12:37 AM CST

Hello Everyone!

Just a short update to say Joshua is doing well! He was excited to go to school in his batman stocking cap today. Evidently all the other little boys in his kindergarten classes are wearing really cool hats to school and Joshua wanted to show them his batman hat. When we got to school, he had "hat head" and a smile bigger than you can imagine. I love seeing him happy!

Tomorrow morning Joshua and I will leave around 6:15 AM. We'll get to clinic at 7:30 and be accessed. Then at 8:00, he will be injected for his bone scan and we'll have a break until 10:30. Then we will do the CT scan, immediately followed by the dreaded and very long bone scan. Then, Aunt Nette should be meeting us with McDonalds chicken nuggets while we wait to see Dr. Watanabe and do blood tests and urine tests. All in all, it should be an interesting day.

Thanks for your prayers on Joshua's behalf. I'm hoping we will get by tomorrow without an I.V. I'm also hoping Joshua will be able to lay still for the bone scan without a lot of difficulty. I'm also hoping that I'll trust and enjoy the day with my son! The last 2 days have been difficult ones for me and I'm desperately trying to regain an outlook of peace and strength as we take these necessary steps.

Next Tuesday, we will go back for bone marrows biopsies, aspirates and his medi-port removal. I haven't told him that yet. I don't think that will make his very happy.

Thanks for taking the time to drop in and check up on Joshua. Your prayers again are appreciated.

For His Glory,
Janene

Monday, January 31, 2005 10:56 AM CST

Good Morning!

Happy Monday to each of you! Joshua continues to do well! Last Thursday, I took him to the pediatrician here in Topeka. The last time I did that was March 14th, 2 years ago. That was the day this whole journey started. So, this last Thursday was a milestone for us in a weird type of way.

Joshua's pediatrician gave him an antibiotic which has helped him kick his bronchitis and ear infections. Finally, the coughing and runny nose is letting up. That is a relief since he has to lay still for a bone scan and CT scan Thursday.

This weekend was a good one for us! Bethany scored her first basket at her game on Saturday morning. Sunday we went to Church and the kids played with Sarah and Jonathan so Craig and I could go eat with our college Sunday school class. In the midst of everything this weekend, Joshua played a lot of Super Smash Brothers on his Game Cube and Bethany did a lot of homework.

We haven't heard the final confirmation, but it appears as if Joshua will be getting his Make A Wish trip to Disney World in April. Both kids are excited to head towards Florida. With our upcoming Spring Break Collegiate Conference in Colorado coming up, it looks like we're going to be traveling a lot this semester.

Joshua's scan day is this Thursday. We appreciate your prayers on his behalf as this day approaches. We are thankful he is feeling well and consider each day with him a gift.

I'll update more after we scan!
With Hope,
Janene

Tuesday, January 25, 2005 10:43 AM CST

Good Morning All!

Joshua continues to do very well! He has had and continues to have a cold which is annoying to him, but has been been pretty much fine otherwise.

We had a fairly quiet weeekend and Joshua and Bethany both enjoyed just being home. They played with friends and relaxed a lot. We even got some cleaning done which made mom happy!

Joshua's scan day is coming up a week from Thursday on Feb. 3rd. We will doing scans somewhat different now that we have transitioned to doing them here at home. Joshua will have a bone scan and a CT scan Thursday. We will also have a long overdue visit with Dr. Watanabe who Joshua hasn't seen in like forever! Then, as long as Joshua has clean scans, we will have his medi-port removed and bone marrows done the following week. We will wait and do the MIBG scan in a few months with an MRI. Different hospitals do things differently and we have decided to work with them instead of trying to get them to do things the way we were used to in NYC.

We appreciate your prayers for Joshua as scan day approaches. So many people seem to get "false positive" scan results when they transition to their home hospitals after treatment in NYC. We will continue to trust God and ask that He give wisdom to those who will be reading Joshua's scans.

Proverbs 24:10 says "If you falter in times of trouble, how small is your strength!" As I read it yesterday, God reminded me that His strength is perfect and that if I'm faltering, I'm relying on myself.

I pray that you fully recognize His strength in your lives as you walk through today.

Relying,
Janene

Tuesday, January 18, 2005 8:07 AM CST

Good Morning Everyone,

Well, we made it through a very busy weekend and are grateful for so much. Joshua started having headaches last Thursday that didn't go away. This of course set off mom's panic button until Joshua came down with a low fever and a huge, whopping, old fashion cold. Over the weekend we went through a ton of kleenex, and cold medicine and are on the mend for now. We were so grateful when he got sick because we could then rest a little easier about the cause of his headaches. I'm happy to say we are headache free and Joshua is feeling well enough to go to school today. I think he picks up every bug in his kindergarten classroom!

This is going to be a busy week for our family. Washburn begins school today so our college ministry kicks off this week for 2nd semester. Tonight we meet with a couple people from "Make A Wish" who are coming to speak with Joshua. Since his other "wish" never happened, we are going to try once more. Joshua says he is going to ask for a trip to DisneyWorld, so I guess we'll see.

Thanks for praying for Joshua. We appreciate you so very much and thank God for you.

Have a Blessed Week!

In Hope,
Janene

PS Please pray for our friend Joshua Young who we met in NYC. He and his family are incredible people who are going through some pretty tough days. Please take a minute and visit his page and write a note of encouragement to him in his guestbook. It would mean a great deal to them to know that you all are praying for them. His link is listed at the bottom of this page. Thanks!

Saturday, January 8, 2005 1:54 PM CST

Hello Everyone!

Happy Weekend from Icy and cold Kansas! I hope you all are cozy and warm and enjoying your Saturday.

Joshua is doing well for which we are grateful. We all went to Bethany's first Basketball game this morning. She is participating in "Upward Basketball" and enjoyed herself this morning winning her first game. Joshua and I cheered from the sidelines and Craig sat on the bench and assisted the coach. It was so much fun doing a normal Saturday activity together as a family. Joshua would of preferred that the buzzer be much quieter, but I think he will adjust:)

Joshua did go back to school Friday after the ice storms. He continues to enjoy school and is making progress with his reading and writing. He brought home his first math worksheet Friday afternoon. It was simple addition and I wanted to cry. At one time, I didn't know if Joshua would ever have the opportunity to learn how to add numbers. I am grateful for simple fruitloop addition worksheets, I'm grateful for the opportunity for my son to learn, but overall, I find myself increasingly grateful for each day we are given. The little opportunities each day are filled with are treasures to me and I pray I will take each opportunity and use it to the fullest.

Have a great day today! Thanks for taking the time to stop by and check in on Joshua.

With Love & Gratitude,
Janene

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

I CHOOSE LOVE
No occasion justifies hatred.
No injustice warrants bitterness. I choose love.
Today I will love God and what God loves.

I CHOOSE JOY
I will invite my God to be the God of circumstance.
I will refuse the temptation to be cynical.
I will refuse to see people as anything less than human beings, Created by God.
I will refuse to see any problem as anything less than an opportunity to see God.

I CHOOSE PEACE
I will live forgiven. I will forgive so that I may live.

I CHOOSE PATIENCE
I will overlook the inconveniences of the world.
Instead of cursing the one who takes my place, I’ll invite him to do so.
Rather than complain that the wait is too long, I will thank God for the moment to pray.
Instead of clinching my fist at new assignments, I will face then with joy and courage.

I CHOOSE KINDNESS
I will be kind to the poor, for they are alone.
I will be kind to the rich, for they are afraid.
I will be kind to the unkind, for such is how God has treated me.

I CHOOSE GOODNESS
I will go without a dollar before I take a dishonest one.
I will be overlooked before I will boast.
I will confess before I will accuse.
I choose goodness.

I CHOOSE FAITHFULLNESS
Today I will keep my promises.
My debtors will not regret their trust.
My associates will not question my word.
My husband will not question my love.
My children will never fear that their mother will not come home.

I CHOOSE GENTLENESS
Nothing is won by force. I choose to be gentle.
If I raise my voice may it only be in praise.
If I clench my fist, may it only be in prayer.
If I make a demand, may it be one of myself.

I CHOOSE SELF-CONTROL
I am a spiritual being….
After this body is dead, my spirit will soar.
I refuse to let what will rot, rule the eternal.
I choose self-control. I will be drunk only by joy.
I will be impassioned only by my faith.
I will be influenced only by God.
I will be taught only by Christ.
I choose self-control.

Love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control.
To these I commit my day.
If I succeed, I will give thanks,
If I fail I will seek His grace.
And then, when this day is done,
I will place my head on my pillow and rest.

Thursday, January 6, 2005 7:50 PM CST

Hello Friends,

Joshua is doing well! He's been home the last 3 days, but for normal reasons, which is way cool! Tuesday, we went to KC to a clinic appt. and then to his dentist appt. The good news is that his medi-port flushed easily and his teeth looked great. Wednesday and Thursday he stayed home because school was cancelled thanks to the ice storm that went through Kansas. He will be anxious to head back tomorrow morning.

We're still waiting to speak with the correct people at Children's Mercy to schedule Joshua's scans and medi-port removal. Our nurse practioner has been out on a long Christmas vacation and when she called today, I was out. Hopefully we'll hear back tomorrow.

Besides that, things are waaaaaaaaaaayyyyyyyyy too normal here at The Freerksen home, and we love it! So with no other news to speak of, I'll sign off and wish you a warm and cozy January weekend! Thanks for taking time to stop by and check in on Joshua!

With Hope,
Janene

Monday, December 27, 2004 11:15 PM CST

Hello Everyone,

Just wanted to write a short note to say Joshua continues to do well. He loved every minute of Christmas and will no doubtedly start looking forward to next Christmas immediately.

Joshua appears to be pain free and is waking up early these days to play game cube. Last night he came into our room around 2:00 AM and said he wanted to be up at night to play instead of sleeping at night. Our new rule is anything before 6:00 AM is too early to wake up and play Mario. Let me tell you though, he's been watching that clock.

Tonight we had a great time at Dr. and Mrs. Gimple's home. We celebrated Christmas and Sarah's birthday and looked at pictures from mission trips. The kids were so excited to go and had a lot of fun. The only thing they were sad about was that it was too cold and too dark to ride Shaw, their horse.

Wednesday, the kids are looking forward to going to Chuck E Cheese with their cousins from Maryland. They enjoy each minute they get to play with Rebecca and Tim.

This weekend, we will be going to Newton to celebrate a late Christmas with my mom. She will be returning from Ecquador where she spent time with my sister's new baby girl and the entire family. Bethany and Joshua are looking forward to Christmas with Grandma Della, and will try and stay up to see 2005 begin.

That's about all the news I know for now. Joshua will go back to school Monday and Bethany has yet another week off. We will be scheduling a clinic appt. to flush Joshua's medi-port sometime this week and will be discussing upcoming scans and schedules for Joshua soon.

Thanks again for checking in on Joshua. We love you all dearly and so appreciate your continual support.

With Love,
Janene

Friday, December 24, 2004 3:05 PM CST

***Check out the new pictures on the photo page! The front page photo is Joshua on the right and his best friend Jonathan on the left.***

Merry Christmas!

Joshua is doing well! We appreciate each one of you and thank you for your continued prayers and for taking the time to stop by and check in on our son! Our family is going to have a wonderful Christmas this year. We are rejoicing in the hope that is ours because of Jesus Christ in our hearts and lives. Our prayer is that you know Him and also experience the hope He offers each one of us!

Only because of that hope, I can wish you from the depths of my heart...Merry Christmas!

Janene for all 4 Freerksen's

Saturday, December 18, 2004 5:11 PM CST

A Mother’s Christmas Prayer!

Thank you for another Christmas together. My heart is bursting with gratitude for one more season here on earth to celebrate your birth. Christmas is hard, because of the paralyzing fear it will be our last together. But this Christmas I’m so much more grateful than scared. You have brought us through so much. The sweet mercies that surround us as they fall from your hands remind me of your unfailing love and your promise to stay with us till the end. That’s why I’m grateful! And this year, that’s why I choose to celebrate with joy. Emmanuel has come. You are with us. You walk with us in joy, in sadness, in life and in death. I understand the yearning of those who waited for you to come so many years ago. They needed a Savior, they needed hope, and they needed peace. That’s what makes this Christmas so special. You are Emmanuel. You have come! You are my Savior, you are my hope and you are my peace. You will walk with us through this story. So, this Christmas I celebrate more than your birth. I also celebrate all you have given us. Now, we watch and wait for your coming in a different way. We wait for the next time you come to us…when we will see your face and be able to bow at your feet with a heart full of gratitude and thank you for Christmas!

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

Hello Everyone,

Just wanted to write and say Joshua is doing better today. He did give his stomach bug to his sister who is sick today, but we're grateful it's seemingly a 24 hour thing.

Joshua and I did go shopping today. He picked out a present for Bethany and daddy and was very pleased with himself. I had so much fun with him at Target. I just slowed down my pace and looked at things from his perspective. He enjoys each minute and I did too!

Have a good weekend as you prepare for a Merry Christmas!

Love,
Janene

Friday, December 17, 2004 4:35 PM CST

Hello Everyone!

Happy Weekend to each of you:) Bethany had her last day of school today and Joshua will finish on Tuesday. They are both ready and waiting for Christmas to be here!

Joshua got sick last night and seems to have had a little stomach bug. He has been home all day and taking it easy. Hopefully he will feel better tomorrow.

We have decided to forego the trip to NYC after Christmas and will be doing scans here in KC in January sometime. We decided we couldn't justify the expense of going just for scans since we can do them here.

Other than that, things are going well and we are looking forward to celebrating the birth of our Savior and the beginning of HOPE! I hope this Christmas will be one of amazement for you as you remember again the incredible gift God gave us when he sent His Son to the earth for you and me. Because of Him we have hope. Because of Him we have peace. And, because of Him we have life. That's a lot to celebrate and I wish you and your family an incredible season of remembering and rejoicing.

Rejoicing & Remembering,
Janene

Thursday, December 9, 2004 10:36 AM CST

Good Morning!

Joshua has a new baby cousin this morning. Lindsey Raquel was born in Quito, Ecqador this morning at 6:30 AM. Kristi and Lindsey are doing fine. This sweet little girl is being welcomed into the world by Scott and Kristi and big brother's David, Joel and Luke.

Joshua says he wants to hold his new baby cousin. He will be facinated by her when we finally do get to see her. Joshua is very good with babies and younger children.

Speaking of Joshua, he continues to feel great. He has been back to school all week and hasn't complained once about pain or any other trouble. For that we are truly grateful. Joshua continues to anticipate Christmas and is enjoying all the fuss associated with the Christmas Season. Sunday, he will sing in his very first Christmas program. I'm excited to see that and will be memorizing every moment.

That's the news for now! When you pray for our Joshua, would you please remember a friend of ours we met in NYC. Joshua Young is battling relapsed Neuroblastoma and is beginning a new chemo drug at this time. The next few weeks are a very significant time for him and his family as they hope and pray this drug will be effective in battling this beast within their precious son.Joshua Young
They are a very special family and I would be grateful for your prayers on their behalf.

With Much Love & Appreciation,
Janene

Sunday, December 5, 2004 3:16 PM CST

Hello Everyone,

Just wanted to write and say Joshua is feeling so much better. Yesterday was the first day that he didn't complain of any pain. We went to Melvern for most of the day and Joshua played and didn't seem to have any issues with pain. Today he continues to feel well. It is looking more and more that he needed extra time to heal after his surgery last Monday.

Thanks for your prayers on his behalf and for taking time to stop by and check in on Joshua. We appreciate your prayers and support so much.

This morning we had such a wonderful time at Church. I will write more about it later cause I need some uninterrupted writing time to express all God is doing in my heart because of cancer and because of Christmas.

Only By His Peace,
Janene

Friday, December 3, 2004 9:56 AM CST

Good Morning!

Well it has been an interesting week. Joshua has continued to stay home from school because of his pain. At this point, we are thinking it is still from his surgery on Monday. He says "my head hurts" then he points into his mouth. The doctors indicated he shouldn't have much pain from removing his adenoids, but from what I read, it is possible. The antibiotic we got on Tuesday does seem to be helping. Joshua even slept through the night last night which he hasn't done all week. So, whether it is a post surgical infection, regular sore throat or just post surgery pain, I'm not sure. I'm just glad when he points into his mouth instead of at another place on his head to show me where it hurts.

This week we're definately helping Tylenol stay in business. I'm really hoping all this will soon blow over. I was expecting a simple tube surgery on Monday and didn't expect a week of this.

Besides all that, Joshua continues to get excited about Christmas. He loves to press our nativity button that tells the Christmas story and also often plugs in the tree first thing in the morning. They will have Christmas programs next weekend which I'm sure they will enjoy.

That's about all the news I have for now. I hope you and your families are enjoying December as you get ready to celebrate the birth of our HOPE. Thanks so much for taking time to stop by and check in on Joshua.

Merry Christmas,
Janene

Wednesday, December 1, 2004 11:36 AM CST

Good Morning Everyone,

Well I have both kiddos home with me today. Bethany has some type of bug and has been feeling quite lousy. Joshua has been fighting some killer headaches since yesterday after school.

When I picked up Joshua after school, he complained of a significant headache. When we got home, I have him Tylenol immediately and figured it would go away. Well, it did lessen, but hasn't stopped since. I have given a lot of tylenol and even tried some of our dilaudid last night. He woke up at 2:00 AM in a lot of pain and so we gave him more meds and let him sleep in our bed.

We're hoping the headache is from surgery. Dr. Barnes has ordered another antibiotic with the thought that he has a bacterial infection from surgery. I'm hoping that will work quickly and that Joshua will be feeling better soon.

Well, that's about all the news I have for now. I'm playing nurse mommy today and actually don't mind it at all except for the constant battle I fight to not worry about the cause of pain for my Joshua.

So, I am enjoying the day with my 2 gifts. I am grateful for them and for today. I pray today will find you appreciating the gifts of those you love as well.

Hating headaches, but loving each minute...
Janene

Monday, November 29, 2004 12:47 AM CST

Hello Everyone,

We hope you and your family had a wonderful Thanksgiving! We traveled to Newton and spent several days with my mom and twin sister Jeanette. It was a special time to remember all of the blessings we often ignore.

This morning, Joshua had surgery at 8:00 AM. He was out in about 35 minutes and mad mad mad! Boy, the nurses come running for mom and dad when they need them to comfort the inconsolable!

They ended up doing more than the tubes. Joshua's adenoids had grown back and needed to be taken out again. So, they had to do the whole meal deal with the IV, breathing tube etc. By 9:30 we were up on the pediatric floor and by 11:30 we were at Burger King cause Joshua was starving.

Now, Joshua is happily playing Super Smash Brothers on Game Cube and is hoping the snow keeps coming. Overall he is fine and even said on the way home "mommy, I had fun at the hospital today".

Joshua's abdominal pain has stopped and I'm not sure what it was. He had 2 nights where he complained at bed time and it hasn't happened again. I almost am suspecting some anxiety issues, but we'll keep taking it a day at a time.

We still plan to do one last set of scans in NYC right after Christmas. Joshua will have his medi-port removed and will have bone marrows, CT Scan and MIBG. Then we're hoping to be home and start 2005 cancer free.

Besides that...we're enjoying the anticipation and decorating for Christmas. The kids are both wired and very happy. Joshua's eyes just sparkle and we are grateful to be enjoying these days with good health and hopeful hearts!

In Hope,
Janene

Tuesday, November 23, 2004 9:48 AM CST

Psalm 18:30-33
As for God, his way is perfect; the word of the Lord is flawless. He is a shield for all who take refuge in him. For who is God besides the Lord? And who is the Rock except our God? It is God who arms me with strength and makes my way perfect. He makes my feet like the feet of a deer; he enables me to stand on the heights.
______________________________________________

Good morning everyone!
Last night the kids and I made turkeys out of cookies and candy. They each wanted to take them to school today for snacks. Bethany actually helped quite a bit and Joshua did a very good job of standing beside us and eating the different parts of the turkey. They ended up turning out quite cute and the Joshua was so proud when we took them into his classroom this morning.

Joshua had some stomach pain last night before bed. This was magnified in my mind because all evening he had walked around lifting the bottom of his shirt up. When he was diagnosed with Neuroblastoma, we always knew when his stomach hurt because he would lift his shirt. As you can guess, I grilled him and finally gave him tylenol and put him to bed. The good news is he slept all night and that it was likely a normal stomach ache. The reality though is that I don't know and must leave it and the future in the hands of the God who made him. He truly is our refuge and our rock!

Standing on the heights,
Janene

Monday, November 22, 2004 1:02 PM CST

Hello Everyone and Happy Monday!

Joshua is doing well and we had a busy, but fun weekend! Friday night we had our college Thanksgiving Dinner. It was a bit crazy getting ready for, but ended up being a great evening. Thanks Lynda, Marsha, Crystal and Nicki for your help:)(

Saturday, we stayed home all day and had a visit from Jessica. The kids hadn't seen her in ages and it was great to see her and get caught up at least a little:)

Sunday we had dinner with our college students at Scott and Linda Shreve's home. We had a mexican buffet and I had each of the students bring something. It turned out to be a very good time for our students to get to know a great couple in our church. Joshua was terrified of their 2 very tiny dogs. I think the dogs were glad to see Joshua leave so they could run around as they are used to.

The kids have school today and tomorrow and will have a 3 day Thanksgiving break. They are excited for Thanksgiving and have been coming up with Thanksgiving lists with me. I love looking at life from their perspective. They are thankful for so much and often challenge me with their attitudes.

Medically, we may be making a trip to KC Wednesday to get Joshua's medi-port flushed. Then, Monday he will be having surgery for his ear tubes. Besides that, all seems to be well and we are so incredibly grateful for each day we can say that.

Thanks so much for taking time to stop by and check in on Joshua. Your continued prayers for our son mean a great deal to us.

With Thanksgiving,
Janene

Tuesday, November 16, 2004 10:07 AM CST

Good Morning!

Joshua is doing very well. He is feeling great and is becoming very skilled at bugging his sister. One of their daily arguments is when we get in the car to drive to school. Bethany always puts her book bag on the seat between them. They then shove it back and forth complaining that "it's more on my side than yours". I usually just laugh at them cause it's so fun to see them acting like normal brother and sister. On Monday as I was driving them to school I couldn't stop smiling. It was one of those days that I could barely contain my gratefulness...yep fights and all! I wouldn't trade it for the world.

I did schedule Joshua's surgery for the 29th which is the Monday after Thanksgiving. He will go in early and only get ear tubes. It ought to be a fairly simple and short procedure. Hopefully it will help his ears stay free of fluid for the rest of the Winter and cold season.

Thursday Bethany is having Grandparents Day at her school and Joshua is having Thanksgiving Dinner at his school. My mom is coming up to go with Bethany to Grandparents Day and Craig and I will go to Joshua's Thanksgiving Dinner. They both love bringing family to school with them so that ought to be a good day.

We are looking forward to Thanksgiving! We will be going to Newton to spend Thanksgiving with my mom. Next week will be less busy all week because our college students are headed home Tuesday. This Friday night we're doing Thanksgiving Dinner with Christian Challenge. Our students voted for the traditional dinner this year instead of our usual Pizza by candlelight. So think of me on Friday! I'll be cooking Turkey and mashing potatoes for 50:)

Thanks for stopping by to check in on Joshua! I hope you have a great day as you recognize His sweet mercies all around you!

Because of Mercy,
Janene

Sunday, November 14, 2004 3:08 PM CST

Hello Everyone,

Joshua is doing well! Since he started antibiotics last week, he has been pain free and sleeping so much better. We will be scheduling his surgery to put tubes in his ears tomorrow. It could be as early as this Thursday.

Joshua went to school every day but Monday. He felt great and had a blast like usual. He is really taking off with his reading and especially loves reading the easy Dr. Seuss books. I am thankful that the reading is coming easily for him because I did not expect it to be so.

Joshua continues to enjoy AWANA on Wednesday evenings. He is learning many scripture verses and often amazes me by his ability to memorize. Joshua is understanding more and more scripture and last week even used one of his verses during a bed time prayer appropriately. What a blessing it is to watch my son learning to understand and appreciate the Word of God. I am so privileged to watch this journey and walk alongside Him!

This weekend has been a good one for all of us. It has been relaxing and we have gotten a lot done. Last night the 4 of us went to The Mall and ate and wandered around a while. It was great to spend time together and not be in any hurry to do anything or go any place. Craig and I are enjoying the time we spend with Bethany and Joshua more and more. Simply put, they are fun! We laugh a lot and are usually amazed by who they are becoming.

That's about all the news from Freerksen land today! I hope you all have a great Sunday and treasure each moment you have with your children. Our pastor has a wonderful way of speaking about the responsibility of being a parent. He says "God didn't give you a child...He gave you a soul". I love his perspective because it allows me to look at today from an eternal perspective instead of my usual selfish, here and now perspective. And isn't that what parenting is all about?

Thankful for my souls,
Janene

Sunday, November 7, 2004 1:56 PM CST

***New Pictures on photo page***

Hello Everyone,

Joshua is doing OK! He is on the verge of getting sick and today has been complaining of a headache and stomach ache. He says, "mommy, my brain hurts". I'm amazed at how such a cute statement can throw me into such a tailspin of fear! Today has been yet another day for me to practice releasing Joshua to God's hands. I refuse to be engulfed by fear, but can't even begin to explain the battle that wars inside this mom who has only scratched the surface in understanding God's sovereignty.

We have had a good weekend! Yesterday we were home working on some computer projects. Friday, Joshua and I were at Children's Mercy all day doing tests. He was a champ as usual and completed an EKG, Echo, Pulmonary Function test, audiogram, chest xray, spinal xrays, and a HAMA blood draw. We were glad to be home later that afternoon.

This week should be fairly calm. We need to decide who to see and what to do about Joshua's constant cold and ear infections. That should be the extent of the medical happenings in our home this coming week.

I hope you and your families have had a good weekend. Thanks so much for stopping by to check in on Joshua and for your continued prayers on his behalf.

With Love & Appreciation,
Janene

Wednesday, November 3, 2004 10:54 AM CST

Good Morning,

Joshua continues to do well! He is pain free and happy and is enjoying Kindergarten again. He has developed an interesting habit of getting up around 5:30 AM. He wants to either sleep with us or get up and play. We are anxious for him to sleep longer in his bed cause that means I can sleep longer in mine:) I'm just happy that's the biggest concern we have about him at the moment. How cool is that!

Our friend Nathan found out yesterday that he is HAMA positive as well!! Yeah Nathan!!! We are do happy that his treatment in NYC is finally over as well.

This Friday, Joshua will have numerous tests in KC at Children's Mercy. We will be having routine heart tests, lung tests, xrays, and hearing tests. We'll be busy bees running from one clinic to another.

That's about all the news I know! We're a little tired after staying up waaaaaaaaaaaayyyyyyyy too late watching the election news. Thanks for stopping by to check in on Joshua and for your continued prayers on his behalf.

With Hope,
Janene

Wednesday, November 3, 2004 10:54 AM CST

Wednesday, October 27, 2004 11:49 AM CDT

Good Morning!

Happy Wednesday to each one of you. Joshua is feeling great and is back to enjoying Kindergarten. We are still rejoicing in the fact that he is finally totally done with treatment for Neuroblastoma. We are truly blessed!

The kids both have AWANA tonight and so I am trying to gather up costumes for them. Joshua will be King Josiah tonight and Bethany has chosen Queen Jezebel. It ought to be interesting. Joshua will have his school Halloween party on Friday and then on Sunday we will be going to our Church's Trunk or Treat. 80 families will have their cars in the parkinglot with candy for probably about 1000 kids. They will have a lot of other activities as well, and both Joshua and Bethany are very excited about Sunday night.

We'll be going to KC on the 5th for heart tests and lung tests and vision tests. We have scans scheduled in NYC for the last week of December. Joshua will also be having his medi-port removed that week and will start 2005 with no central line of any kind. Go Joshua go!

Thanks again for stopping by to check in on Joshua. We appreciate your prayers and support so very much.

With Hope & Gratitude,
Janene

Saturday, October 23, 2004 10:53 AM CDT

Good Morning From Kansas!

We are home!!! Joshua and I flew in early yesterday afternoon and we are so happy to be here. Joshua has been running around with a huge smile on his face all morning just happy to be home! Craig and Bethany met us in the airport and we had quite a reunion. Since Craig was overseas before we left for NYC, it had been over 3 weeks. We have never been separated so far and so long before.

Joshua understands he is finished with treatment and is thrilled. We are thankful that God has brought us to this point and strive to live each day and every minute mindful of all He has brought us through.

We have a clinic appt. in 2 weeks where we will do some heart tests and hearing tests. Other than that...we plan on being a normal family for a while.

Thanks so much for your prayers for Joshua and our entire family as we have now completed a major leg of this journey. We will still have scans every 3 months and realize the possibility of relapse is great. But, for today we are grateful and we give God the glory for all He has done.

In Celebration,
Janene

Thursday, October 21, 2004 5:35 PM CDT

Hello Everyone,

Well I'm happy to say that our time in NYC is winding up! Joshua and I will catch a morning flight to Kansas City since we don't have to wait for the evening after treatment. He is ready to get home and has been walking around saying "no more needles, no more finger sticks, and no more New York". He does love it here though and I've assured him that we will be back...for fun.

We've had dreary and rainy days since early last week here in the city. I'm anxious to see the Kansas sun. Joshua and I have been hanging out around here most of the time. We've been to the Park every day and to his grocery store with the miniature grocery carts every day. It doesn't take much to keep him happy.

I do want to thank you all for your prayers and encouragement during our final treatment in New York City. Tomorrow will be the end of a very long month and I am so grateful to be finished. On top of all that, now Joshua is HAMA positive and we are finished. Thank you Jesus!

Special thanks to all of you who have signed Joshua's guestbook recently. Words are not adequate to express my gratitude for your words of encouragement expressed during these days.

With Love and Gratitude,
Signing off from New York City one last time,
With Oh so much hope,
Janene

Tuesday, October 19, 2004 4:36 PM CDT

Psalm 66
Make a joyful shout to God, all the earth! Sing out the honor of His name; Make His praise glorious. Say to God, "How awesome are Your works! Through the greatness of Your power Your enemies shall submit themselves to You. All the earth shall worship You And sing praises to You; They shall sing praises to Your name." Selah Come and see the works of God; He is awesome in His doing toward the sons of men. He turned the sea into dry land; They went through the river on foot. There we will rejoice in Him. He rules by His power forever; His eyes observe the nations; Do not let the rebellious exalt themselves. Selah

Oh, bless our God, you peoples! And make the voice of His praise to be heard, Who keeps our soul among the living, And does not allow our feet to be moved. For You, O God, have tested us; You have refined us as silver is refined. You brought us into the net; You laid affliction on our backs. You have caused men to ride over our heads; We went through fire and through water; But You brought us out to rich fulfillment.

I will go into Your house with burnt offerings; I will pay You my vows, Which my lips have uttered And my mouth has spoken when I was in trouble. I will offer You burnt sacrifices of fat animals, With the sweet aroma of rams; I will offer bulls with goats. Selah Come and hear, all you who fear God, And I will declare what He has done for my soul. I cried to Him with my mouth, And He was extolled with my tongue. If I regard iniquity in my heart, The Lord will not hear. But certainly God has heard me; He has attended to the voice of my prayer. Blessed be God, Who has not turned away my prayer, Nor His mercy from me!

_____________________________________________________

Hello From NYC,
Psalm 66 was one of the passages in The Bible I read today for my quiet time. It is a very fitting chapter for today! It is with great joy and gladness that I shout from the rooftops...JOSHUA IS HAMA POSITIVE!

I just got the phone call from one of our nurse practioners at Sloan who confirmed what we had been thinking since Joshua has had no pain or hives this round of antibodies. She said "Mrs. Freerksen...we have a HAMA". My heart jumped with gratefulness and I am in awe that I can finally say that Joshua is done with his treatment for Stage 4 Neuroblastoma. Yes, we'll still have regular scans, but as far as treatment, we are finished.

During treatment these last 2 days, I have observed 2 little boys who are on their first round of 3F8. I have watched the pain and horror we began almost 1 year ago from across the room. It has caused me to think back over this year and realize how incredibly far Joshua has come. For me to say "God is good" is such an incredible understatement! I want to give God all the glory for the work He has done in Joshua's life and in his body while he has fought this battle. I also want to give Him the glory for what He has done in my life and the lives of Craig and Bethany. We are not the same, nor do we wish to be. Neuroblastoma came in and threatened to devastate our son, our family, our ministry, our marriage and our joy. With triumph, I can say that because of Jesus Christ, we have not been defeated. He has walked beside us and helped us overcome what I never dreamed would be survivable.

So, for today, we are celebrating! Please read Psalm 66 once more in honor of Joshua and join us in giving God the glory for everything He has done.

For His Glory,
Craig, Janene, Bethany & Joshua Freerksen

Monday, October 18, 2004 5:55 PM CDT

Hello Everyone,

I hope each of you had a great weekend! Joshua and I had a lot of fun showing our friends Marsha and Jonathan around NYC. Friday, we picked them up late from LaGuardia and showed them the Ronald McDonald House. We didn't get the boys to bed until after midnight.

Saturday, we went to Central Park and saw the zoo. The boys climbed rocks like crazy and then we went on to Times Square where we ate at Applebees and saw Toys R Us. On the way home we stopped and saw Rockafella Plaza and The American Girl Store. The boys didn't care for that store!

Sunday we took the subway to the tip of Manhattan and went on the ferry to The Statue of Liberty Island and then back to Times Square. We all rode the ferris wheel inside Toys R Us and then took a very long time to get home. We were tired to say the least.

Today we took them to the clinic for treatment and they saw Joshua's hospital! Jonathan was a good moral support for a Monday where we have 3 needles to endure.

The good news is that Joshua's MIBG scan is clean! And, that Joshua continues to show no sign of pain or hives from treatment. We should know tomorrow night of Wednesday morning if he is HAMA positive.

Thanks for your prayers for Joshua as we proceed through our 7th round of antibodies. We appreciate all you do more than we can say.

With Love & Gratitude from NYC,
Janene

Friday, October 15, 2004 12:28 AM CDT

Hello Everyone,

Well we now are officially done with week 1. Joshua had his MIBG scan this morning. It was particularly difficult today because Joshua had the wiggles. He itched and hurt and yawned constantly. The technician kept threatening that he'd have to start over and even that didn't help a whole lot. I brought the computer and some DVD's to play after his head was scanned, but left them upstairs in the stroller in the clinic. So, we counted and spelled words and did everything we could think of to lay still. I should hear preliminary results on Monday from the scan.

Treatment today was again very easy. Today, Joshua didn't even ask for his oxygen tube which is "big". He was playing PBSkids.org online and didn't even notice when they put the 3F8's through. So...no pain, no hives and we will wait to hear the results of his HAMA test Wednesday morning.

This week we got to see our friend Bryce and our friend Maddie who have also been getting antibodies all week. Bryce had scans today and yesterday so we look forward to hearing good news back from them. Maddie hopefully will be HAMA positive after this round as well. She is adorable and handles all of this antibody junk like an old pro. Her mom and I decided that since Joshua and Maddie were in PICU together after surgery last year, they should become HAMA positive together right about now. So for now we'll keep our fingers crossed:)

Tonight Joshua and I will go to LaGuardia and pick up both of our best friends. Marsha and her son Jonathan are coming to spend the weekend here in NYC. We are hoping to have a couple nice days to show them the sights before returning to clinic on Monday. The Statue of Liberty, Times Square, Central Park etc. are all on the agenda. Knowing the boys, we will also carve out some time for Mario and Luigi as well. It ought be a good weekend.

That's about all the news I have for now. I hope that you all have a great weekend, and if you are experiencing difficult times, I pray you will find rest under the Shadow of the Almighty.

Under His Wings,
Janene

Thursday, October 14, 2004 3:20 PM CDT

Hello Everyone,

Well, we are done with Day 4 of treatment and thank you for your prayers. Today we went in early for antibodies and had a similar day to what we've experienced this round so far.

The whole process is so different without the pain and hives we have always experienced. Joshua was in and out in about an hour and a half. Usually when the flush starts, the pain begins. This week, when the flush starts, Joshua says "can we go now?" He feels good and thinks we're done. It is truly a remarkable change. We have gone from 5 doses of dilaudid mostly of the days last treatment to 0 this round. His lack of hives also makes me quite sure he is HAMA positive. He usually required 3 doses of benadryl/vistaril to deal with his hives and only has the mandatory pre-med dose this week.

Dr. Kushner asked on our way out if we had any pain today. He confirmed that we will draw his blood early Monday and test for HAMA Tuesday. I will hear Wednesday morning if we are HAMA positive. If he is, we will likely not be treated Wednesday - Friday. Wouldn't that be cool!

Well, we came back to the room and got some lunch. Then a little before 2:00 we headed back to Nuclear Medicine at the hospital to be injected for his MIBG scan tomorrow. We waited over an hour for his 2 minute injection. It's typical, but very tiring! Tomorrow Joshua will be scanned at 8:00 AM NYC time. We ought to be done and up in Bed 5 by about 10:00 AM for antibodies.

As far as the scan goes, I am feeling a lot of peace about tomorrow. I know all too well that my hopes could easily be shattered tomorrow morning, and that our world could be turned upside down at any time. But tonight as I type, I do so realizing that God is at work in my life. He has been teaching me this week about all the needs He created me with and how He wants to be the only one to fulfill those needs. I have no idea what tomorrow holds, but I am eternally grateful for the way God has spoken to my heart this week. He is teaching my how to want Him more than I want my Joshua to live. I didn't know if that was possible. So, as we wait, we continue to trust in the one who has walked with us every step of the way and promises to finish the journey by our side. That is love, and for tonight...that is enough!

Looking to Him for my needs,
Janene

PS 5 years ago yesterday, my dad entered the doors of Heaven. I'd like to take just a minute to thank God for the privilege of being his daughter here on earth. My dad taught me through his life the importance of being "sold out" to Jesus Christ. He taught me through his death that the only things in life that matter are the things that will matter for eternity. My life is forever different because of His impact. Thanks Dad! I love you.

Wednesday, October 13, 2004 1:27 PM CDT

Hello Everyone,

Well we have 3 treatments down and today was similar to what we have been experiencing. Joshua did not get any dilaudid today, as I asked to forego his initial pre-med dose as well. I don't believe he had any antibody pain, but am not positive. Joshua did feel pretty yucky throughout, but I think it might be something simple like feeling woozy from the benadryl! Towards the flush, which is when he has his pain, Joshua all of a sudden feels better and is ready to eat. It is sure a different ball game this time around.

Thanks for your prayers on Joshua's behalf. We will continue to hope we hear soon that he is HAMA positive, but know that is up to God's timing and His perfect will. I am appreciating the easier treatments and the lack of recovery time afterwards. I think we could walk back to the Ronald the way it's going, but I think I'll keep taking the stroller...just in case!

I'll go for now!
Thanks for all you do!
Love
Janene

Tuesday, October 12, 2004 11:29 AM CDT

***Evening Update****
Joshua went on to complete the treatment with no pain and no hives which is truly different than any other treatment. I was told that they are thinking HAMA but won't say it yet!!! They will likely test on Tuesday next week! Tomorrow, We'll not do the pre-med dose of dilaudid and see how he does with nothing! Go Joshua Go!!!

Hello Everyone,

Joshua's treatment yesterday was as easy as I have seen it which I hope is a good sign. He said ouch once and felt uncomfortable, but the pain was very significantly less...especially for the first Monday.

As I write, I am waiting for the pain from treatment #2. He is on the flush and playing comfortable...so I continue to hope for HAMA.

Yesterday we went back to the room and got in about 4:30 or so. Joshua spent a little while recovering and we then went to the grocery store. He had a ball cause they have a miniature grocery cart for kids to push around. He was going around throwing his favorite snacks and drinks into his little cart and I really wanted a video camera. I just followed him and chuckled.

That's about all for now. Thanks again for your prayers as we continue through this journey.

His,
Janene

Monday, October 11, 2004 12:56 AM CDT

Hello Everyone,

Just wanted to write a short note to let you know we made it to NYC fairly easily. We are in room 701 this time around and Joshua has been happy and feeling well.

We are still in the clinic today waiting to get started. Today is a typical Monday and we have been waiting for a long time. Hopefully Joshua will get started soon so we can get out of here and have one day done.

Thanks for your prayers. We'll soon have 9 days to go!

With Love,
Janene

Thursday, October 7, 2004 9:10 AM CDT

***Special News Update to Craig Freerksen who is a very, very long ways away from 3 people who love him dearly!***

We love you and miss you intensely. We are glad you're having a great trip, and look forward to hearing all God is teaching you and preparing for us. Thanks for being the best dad and the very best husband in the entire world. Even though we're on opposite sides of the earth for now, our hearts are united with yours, as we continue on in this journey and partnership we began almost 12 years ago. So, until the 22nd, know that you are dearly loved and incredibly missed!
Joshua, Bethany and your Janene

_____________________________________

Good Morning!

Happy Birthday To You!
Happy Birthday To You!
Happy Birthday Dear Joshua!
Happy Birthday To You!

Can you guess! My Joshua is 6 years old today! It's not a huge deal to him because we celebrated his birthday early since Craig would still be out of the country today. But, for me this day is very significant. My little boy is 6! I didn't know if I'd ever have the privilege of seeing him 6 years old. But today I do have that privilege...and I am celebrating the gift of another year and the gift of a little boy who has taught me how to truly live while walking through the valley of the shadow of death!

Even more significant is what took place on our drive to school this morning. Joshua was scared of the rain and we were talking about the verse in the Bible that says "when I am afraid, I will trust in God". After much conversation, Joshua prayed 3 prayers from the back seat. He first prayed and said "God, would you please come live in my heart". Next, he said "God...you know all those bad things I have done...I'm sorry about them. Would you please forgive me?" Lastly he prayed and said "God, you can be the boss of my life". He managed to add in "and I'll be the boss of you too." (Mom and Dad have a little more explaining to do on the last one)

We then talked about why God sent Jesus to earth to die for us. Joshua understood more than ever before how Jesus took our punishment for our sins by dying on the cross, and that He did that because He loves us and wants us to spend eternity with Him in Heaven. Joshua then said "full of joy"! I questioned him and asked what he meant and found out he was plain and simply full of joy! Joshua's heart was open this morning and his mind understood so much more than he has up to this point. I have been praying that specifically for him and saw a wonderful answer to my prayer as I watched my 6 year old through my rear view mirror begin a personal relationship with the God of the Universe who created him. It was truly the most beautiful moment I have ever experienced.

Romans 6:23
For the wages of sin is death, but the gift of God is eternal life in Christ Jesus our Lord.

I want to write adequate words to describe how I am feeling and am unable to do so. God has blessed me so abundantly and the sweet mercies that flow down from Heaven astound me! Oh that my life would honor The One who has given His life so we might truly live.

Grateful For Eternity,
Janene

PS Luke 15:7 tells me that Heaven is rejoicing this morning because of Joshua's commitment. That's a party I would love to see.

Wednesday, October 6, 2004 8:57 AM CDT

Good Morning,

Well our dreaded Federal Express Package just arrived! Joshua's GMCSF shots are in the frig and the whole process is starting again!

The dread is huge, but at the same time, I'm mad at myself for not being able to get past that and be grateful that we are still here in this fight. So many friends we know would give their lives to be in the spot we are in with the opportunity of traveling back to NYC for round 7.

So, for today, I choose gratitude. The gift of today with both of my kids demands that response! I'll deal with tomorrow...tomorrow!

Thanks so much for taking time to stop by and check in on Joshua. Thanks also for your prayers as Craig is overseas. He is doing well and will be home Monday evening after we are in NYC! From the way it sounds, he will have many stories to share!

Psalm 37:23,24
If the Lord delights in a man's way, he makes his steps firm; though he stumble, he will not fall, for the Lord upholds him with his hand.

In Hope,
Janene

Friday, October 1, 2004 8:40 PM CDT

Hello Everyone and Happy October!

I feel like this year is flying by! It seems like just yesterday we were welcoming Januaray and before long we will be putting up Christmas trees. I'm grateful to report that on October 1, Joshua is doing well!

We did find out that Joshua has an ear infection today and actually got on some "normal" kid antibiotics. When the doctor said Augmentin and amoxicillin I couldn't help but remember the days of IV Vancomycin I did for weeks during line infections. This time, we'll hope these normal antibiotics do the job.

Last night was a bit long for Joshua. He was up with ear aches a lot. I didn't get much sleep either cause he took over my bed since Craig is gone. When Joshua is in bed with me and in pain, I can't help but remember back to the night I spent with him in March of last year. That was the last night we spent at home before hearing the words cancer and Neuroblastoma. He was miserable that night and in so much pain. I hated to see him have ear aches last night, but I'd take that any day over the pain he had last March.

Craig has arrived at his destination in East Asia. He has emailed twice, but hasn't gotten his phone card to work. He is enjoying his time immensely and appears to be doing well. We are grateful for that.

Well, that's about all I know! I do want to say thanks for taking the time to stop by and check in on how Joshua is doing. We appreciate it greatly. One more week to go at home and then off we go to the big city again. Joshua will be having an MIBG Scan this time to check on the status of Neuroblastoma in his body. We appreciate your prayers as we face the uncertainties scan days bring.

Have a great weekend!
I pray the sweet mercies of God astound you as you realize a tiny piece of the puzzle He is building around you.

Grateful For His Sweet Mercies,
Janene

Psalm 33:13-15
From heaven the Lord looks down and sees all mankind; from his dwelling place he watches all who live on earth-he who forms the hearts of all, who considers everything they do.

Wednesday, September 29, 2004 3:27 AM CDT

Good Morning!

I haven't updated in a while cause things have been just about crazy here in Camp Freerksen! This past weekend, our family and a group of our college students went to Salina for our annual Fall Conference. We met with the other Christian Challenge groups from Kansas and Nebraska for a great weekend of worship and challenge. Our students had a great time and Bethany and Joshua perhaps had the best time. They enjoyed playing with their friends just about non stop all weekend. Some of the KSU Christian Challenge directors have children about the age of Bethany and Joshua and so my kids look forward to each Fall Conference and Spring Break Conference when they get to see Mary, Suzanna, Thomas and Elijah!

Since then, we have been getting ready for Craig to leave for East Asia. As I type early this morning, he is on the way to the airport to fly "a long time". He is excited about his trip and we all appreciate your prayers for our family during these next 3 weeks. We have never been separated so far and so long and even though we know God is leading in this direction, it doesn't make it any easier. Bethany will see Craig again on October 11th. Joshua and I will have to wait till the 22nd when we arrive home from treatment #7 in NYC. UGH!!!! The next few weeks promise to be long ones.

We did get to squeeze in an early birthday celebration for Joshua Monday night. Since Craig will be gone on October 7th, we celebrated Joshua's birthday early so that daddy could come to the party. Joshua had a wonderful time at Chuck E Cheese...this time with hair. I remembered often the party we had for Joshua this time last year as he was preparing to have his stem cell transplant. He didn't have a lick of hair, but was happier than any human being I've ever seen. To say we are grateful for another birthday with Joshua is a gross understatement. We are truly blessed beyond measure at the events of this past year as Joshua has done so well in recovering from his surgery, transplant and other treatment. He remains cancer free for today and for today we are truly grateful.

This week, we don't have any medical hoops to jump through. Next week, we'll start the shots in preparation for NYC and we will be there for treatment on the 11th. It's amazing how fast 8 weeks at home go. I dread the 2 weeks in NYC, but at the same time feel incredibly grateful that Joshua can do another round because that means we are still free of this monster we affectionately call Neuroblastoma. God is good and we trust His heart as we continue on with this journey.

Thanks for stopping by to check on Joshua and for your continued prayers on his behalf. God bless you as you passionately pursue the things in life that will matter for eternity!

With Love and Purpose,
Janene

Sunday, September 19, 2004 10:00 PM CDT

Hello Everyone,

Joshua has had a good weekend and we just now got home and got them to bed. We had a fabulous time this evening out at Dr. and Mrs. Gimple's ranch. Bethany rode Shaw and Joshua drove the tractor. They both played on a Hay Mountain and had tons of fun playing with their friends Sarah and Jonathan. Joshua fell asleep within minutes after getting into the car to head home. As usual, it is wonderful to see him running and playing outside enjoying being a normal kid. Thanks Ken & Lynda for a wonderful evening!

Tomorrow, Craig will be taking Joshua to Kansas City for a regular clinic appt. We will check his counts and flush his medi-port and hopefully find out a little more about when we will start re-immunizing him since we are almost a year post transplant. It has been a while since we've seen Dr. Watanabe so it ought to be a good visit.

That's about all the medical news I have at the minute! I will update soon if we hear anything major. Thanks so much for checking in on Joshua and for many of you who continue to pray for our son as he continues this journey. We appreciate you and are grateful to God for his countless blessings that continue to astound us!

For His Glory,
Janene

Tuesday, September 14, 2004 9:09 AM CDT

Good Morning!

Joshua is feeling better. His cough doesn't want to leave, but the fever and chills are gone! He went to school yesterday and today and seems to be feeling OK.

Joshua continues to love school! We have also started Wednesday night AWANA at church, and Sunday night kid's choir. He has amazed me with his adjustments to all of these activities. He is excited for them and anticipates going all week. I thought he might be tired out, but he seems to be going strong through all of it. He is a trooper, but even more importantly enjoys each minute of the journey.

Next week we will have 1 clinic appt. Besides that, we don't have anything medical until we go back to NYC on October 10th. That is a blessing we are grateful for.

Thanks so much for taking the time to stop by and check in on Joshua. We appreciate your prayers and support greatly.

Love and Hugs From Joshua and the rest of us!
Janene

Saturday, September 11, 2004 10:31 PM CDT

Hello Everyone,

Well this wasn't the Saturday we had planned on. Joshua woke up with a 101.5 temp. Since he still has a medi-port, we had to call the docs and totally expected to go into the hospital. They ended up letting us stay home and just monitored him. His fever quickly went down with Tylenol and he felt fairly well until evening. Joshua fell asleep under our futon around 5:00 or 5:30. Basicly, he's been asleep ever since. He was starting to chill again so we gave him Tylenol and put hime to bed. I am hoping he can sleep OK tonight, but will be headed to bed soon myself in expectation of a long night.

Joshua has had a cough for the past few days, so we are hoping it's a little bug from school. Thanks so much for remembering Him to The Father in the next few days. We greatly apprecate all you do to walk by our side.

Needless to say, we were unable to attend the Relay for Life in Lyndon. We were very sorry to miss the chance for Joshua to walk the Survivor Lap! We're already planning for next year though:)

Today is a year since our little friend Maddie B. had her surgery in NYC. Joshua's anniversary will be tomorrow! They lay side by side in the ICU for a very long weekend! Now, a year later, Maddie is showing all those she meets exactly how to conquer life. Go Maddie go!

That's about it for now. This mom is tired out and will quite possibly be up with Joshua tonight:( Ugh!

Love,
Janene

Thursday, September 9, 2004 8:42 AM CDT

Good Morning Everyone,

Joshua continues doing well for which we are very grateful! He has been sleeping better the last few nights, and just needs to get rid of his cough.

This morning, he took Grandpa and Grandma with him to school for the annual Grandparent's Breakfast! I'm sure he will have a great time showing them off:)

This weekend, Joshua will walk in the Survivors Lap of the Relay For Life in Lyndon, KS. Significantly, Sunday will mark the 1 year anniversary of him being cancer free. We will be celebrating!

Thanks for checking in on Joshua!

Love,
Janene

Saturday, September 4, 2004 11:53 AM CDT

Good Morning!

Well, I have good news and bad news this morning. First and most importantly...Joshua's bone marrow biopsies were clean. No Neuroblastoma found!!! We finally got the word yesterday and were very happy about those results.

We did however receive confirmation that Joshua is HAMA negative once more. That means that Joshua and I will be making a solo trip to NYC on October 10 since Craig will be out of the country.

Last night, Joshua and I went to the Calvary Bible College Volleyball game. I haven't gotten to see my sister coach for a long time, so that was a treasure. Joshua enjoyed seeing Nette and Carrie and Grandma Della, but wasn't as captivated by the actual game as I had hoped.

While we were at the game, Craig and Bethany went to the Steven Curtis Chapman concert in KC. They had a wonderful time and Bethany is now more than ever a Steven Curtis Chapman fan. We got home after 2:00 AM this morning so as you can imagaine...this morning has been a lazy one:)

September looks to be an exciting one for us. We only have one clinic appt. for flushing his medi-port. We will be participating in the "Relay For Life" in Lyndon next weekend, we will be celebrating Joshua's 6th birthday early since Craig will be out of the country on his real birthday, we will be celebrating Joshua's year anniversary of the day he was declared NED (no evidence of disease), and we will be enjoying each day we are given to spend together as a family.

This morning Joshua was showing me his papers from Kindergarten that he brought home yesterday. He was so proud of his papers and enjoys showing us all he does. While we were talking about it, he came and crawled on my lap to give me a hug. He said "mommy, thanks for letting me go to kindergarten". He thinks it is a special privilege and doesn't understand that school is a requirement of the law of our land. Simply put, he appreciates the opportunity more than anybody else I've ever seen.

Joshua also has been standing up to his sister a lot more during these past few weeks. He isn't "taking it" like he used to! Because of that, we are seeing some fighting happen between our 2 children that hasn't been normal in our home. Now to most of you, that would be bad news. To this mom though, it is music to my ears. I rarely listen to them fight without smiling. Even in the midst of screams and tears, thoughts of gratefulness flood my mind. I am simply grateful that my children still have each other and have the opportunity to be normal brother and sister.

The other day, Joshua was upset with Bethany because she had taken a toy of his and was taunting him about it. He got so upset and ran to me screaming and crying. I, being in the grateful mode, talked calmly with him about talking with Bethany instead of yelling. He sat down by me as Bethany came running in to defend herself. I started talking with her and that's when Joshua stepped in. He held up his hand to me and said "wait mom, let ME talk to her". He quietly got out of his chair and looked at me. There was a little grin on his face and I could tell he was weighing his words and trying to decide if he would get in trouble for saying the words he wanted to say. After a few seconds, he found the confidence he needed and looked Bethany squarely in the face. He said "Bethany, you are FIRED!"

I told him to use words, and that's what he did. I had to smile:)

Well, that's about all I know for now. I appreciate you taking time to stop by and check in on Joshua. Have a great weekend! I pray you find joy in the little blessing from God.

Living Under His Blessings,
Janene

Thursday, September 2, 2004 9:04 AM CDT

Good Morning!

I've been waiting to update...hoping we would have biopsy reports. The initial aspirates showed no NB, but we're still waiting for the official biopsy reports which are the most important.

Joshua continues to feel well. He has had a good week and is enjoying school and everything else he does:) Last night he and Bethany started AWANA at church. He had a good evening and will be starting to do a lot of memorization!

I'll update more when I hear about the biopsy reports. Thanks for praying and for stopping by to check in on Joshua.

Thanks,
Janene

Friday, August 27, 2004 2:38 PM CDT

Hello Everyone,

Craig and Joshua were home from KC at about 2:00 PM. The bone marrow procedures went fairly well and a very subdued Joshua is home wanting to lay on the couch cause it hurts! He's not getting any arguments from me cause I can't think about 2 long needles extracting marrow from my bone without cringing.

We also had Joshua's blood drawn for his HAMA test. We will be sending it to NYC today for the test early next week. If we get our HAMA miracle, we should hear on Tuesday. That would be way too cool.

Craig is playing in a golf tournament with 2 of his brothers and a nephew tomorrow. The kids and I are planning on a wonderful, quiet Saturday at home. I just wish I could talk Joshua into sleeping past 6:30 on Saturdays:)

Thanks for dropping by to check in on Joshua. He will be feeling a little more spry tomorrow most likely. Thanks also for your continued prayers on his behalf as he continues this journey.

For His Glory,
Janene

Thursday, August 26, 2004 4:21 PM CDT

Hello Everyone & Happy Thursday!

Joshua continues to look great and feel well. We are anxious to get tomorrow over with since "bone marrows" are Joshua's least favorite thing in his cancer life. Joshua will be in the clinic at 8:30 and will be in the O.R. around 10:00. Since we haven't done bone marrows in a long time, we will be a little nervous waiting for the results. We hope we will be able to continue to say "no evidence of Neuroblastoma".

Yesterday Joshua and I were talking about his upcoming birthday, and were discussing where we should have his party. I expected him to say his normal "chuck e cheese", and was surprised by what he said. He thought and thought about which place would be the "funnest" place in the world to have his 6th birthday party and came up with the following...

He said "mommy, it would be great if we could have my birthday at Kindergarten"! So, it's official now...kindergarten is more fun than chuck e cheese! Wow...Vikki, you must be doing a lot of things right:)
Thanks for making kindergarten a great experience for Joshua!

That's about all I know for now. It is so wonderful to be home and to be the mom of a 4th grader who is growing into a beautiful young lady and a kindergartener who continues to show me by his example how to love simply and purely life itself and the people we are blessed to walk through this life with. Thanks Bethany and Joshua for making my job and my life purpose mean so much! I thank God for the treasures of you both!

Thanks for stopping by to check in on Joshua. Also, thanks for praying for him tomorrow as he endures yet another "procedure" in this journey home. You all mean the world to us and we are truly grateful!

Because of Hope,
Janene

Tuesday, August 24, 2004 9:25 AM CDT

Good Morning!

Joshua continues to do well! He is back to sleeping through the nights, and has developed a glorious habit of getting up at 6:30 AM on the dot to come climb in bed with Craig and I. In the morning, I wait for the little sound of his footsteps and can't tell you how much I enjoy those few minutes together before starting the gift of another day together.

This Friday, we will do bone marrow biopsies and aspirates at Children's Mercy in the morning. Joshua will go into the O.R. around 10:00 AM. Hopefully we'll be out and headed home by noon. Joshua hates bone marrows...so we would greatly appreciate your prayers on his behalf that day in particularly.

Kindergarten is going well. Joshua loves it and hasn't once asked to stay home. For those of you who know how much of a "homebody" he is...you understand how "cool" kindergarten must be! I'm so glad he has this opportunity and am enjoying watching him gain independence after being so dependant during the last year and a half.

That's about all the news I have for now! I appreciate you taking the time to stop by and check in on our Joshua. Your prayers and encouragement continue to be a blessing in our lives. I pray God's peace and strength will be abundant in your lives today as you seek to live today for His honor & glory!

For Him,
Janene

Saturday, August 21, 2004 9:22 PM CDT

Hello Everyone,

Joshua continues to do well! Today we had a great day doing very little:) We needed a "down" day after being so crazy this past week.

Yesterday we had a bowling event with our students! It was so much fun watching Joshua bowl. I've never seen anyone else enjoy throwing a ball down a lane as much as my son. He cheered each time a pin fell down. It was totally priceless.

Joshua was sad this morning when he realized he wasn't going to kindergarten this morning. I'm so glad he enjoys school that much.

Well, I don't know much else to post, so I'll say thanks again for stopping by to check in on Joshua. He will be having bone marrow biopsies and aspirates on Friday morning. They are long overdue and will be done at Children's Mercy in the Operating Room.

Have a great rest of the weekend everyone!

With Love & Gratitude,
Janene

Thursday, August 19, 2004 10:42 PM CDT

Hello Everyone,

Joshua continues to do well, and seems to be adjusting quite well to being a kindergartener. He is happy and seems to be getting some of his energy back.

Tonight our family had a wonderful night. Our collegiate ministry "Christian Challenge" officially got kicked off with our first Thursday evening meeting. We just simply had a great evening. We have never doubted that God called our family into full time ministry to college students, but after the last year and a half...it's encouraging to see things going well. It was very evident that God is doing a work at our University, and that He has invited us along for the ride. Pray with us that God would work mightily in the lives of these students who are actively pursuing Him, and that others would notice and desire the peace and joy that comes from having a personal relationship with The God of the Universe.

Bethany and Joshua made several new "college" friends tonight, and played with a lot of "old" college friends. Craig and I believe that there's no better place to raise our children than in the midst of college students who are trying to pursue and seeking to be obedient to God. Wow!

That's about it for now! Next week we'll have a couple medical things to explore, but for now...Life is back to a very new "normal" in the Freerksen household. Thanks so much for taking time to check in on Joshua. Your prayers and encouragement continue to mean the world us us and we continue this path.

For His Glory,
Janene

Tuesday, August 17, 2004 10:20 PM CDT

*****Special Report*****
CT Scan shows no evidence of Neuroblastoma! We emailed Dr. Kushner this morning and got word almost immediately. Thank you Jesus!

Hi Everyone,

This morning, Craig and I took Joshua to Kindergarten and he walked through the door with a smile and waved goodbye. He wasn't sad in the least and was totally excited for his new adventure!

When I picked him up, he ran into my arms and said "mom, it was so cool!" He had a wonderful day, and said he made 2 friends, but did not know their names! I think school will be so fun for him.

When I left Bethany at Kindergarten I went home and cried! I mourned the loss of her preschool years. I was just so sad that those years were over. With Joshua it's entirely different. Today I didn't mourn his preschool years, I celebrated the accomplishments of today. How could I be sad at him growing up, while so many parents, who have buried a child, long for a chance to see one more milestone accomplished by their child. Yes, the preschool years are over, but by the grace of God we've been given the privilege of watching Joshua attend Kindergarten. And tonight...mindful of that privilege...I am grateful!

Janene Freerksen
Kindergarten Mommy:)

Monday, August 16, 2004 9:32 PM CDT

Hi!

Joshua is doing OK and is excited to start school tomorrow. He seemed tired and weak to me today, but I'm hoping those are just post-NYC moments.

Tonight we took him to school to drop off his school supplies for "Back to school" night. He got to hug his teacher and see his room so he knows where he's going tomorrow. He only expressed sadness once and has been excited about the adventure.

We're still waiting on the CT Scan results. I will post them when I hear. Also, we will be having bone marrow tests done in about a week and a half in KC. We continue to enjoy "today" as we live with the uncertainty NB brings.

If you think of Joshua tomorrow, thank God with us that we have made it to this important milestone. He has been good beyond measure to us as He has walked beside us every step of this journey. Tomorrow, on Joshua's first day of Kindergarten, it is Him who deserves the Honor and Glory!

With Joy,
Janene...soon to be "official Kindergarten mommy" once again.

There is None Like You!

"There is none like You!
No one else can touch my heart like you do
I could search for all eternity long
And find there is none like you."

Saturday, August 14, 2004 11:54 AM CDT

Good morning,

Joshua and I made it home very late last night. Our flight was late taking off from NYC due to the rain. We landed in KC about 10:30 PM and ended up getting home a little past midnight.

The flight was OK, except that when we landed Joshua's game boy advance fell off the seat and slid. We tried to find it with the help of the crew, but figure someone picked it up and went home with it:(

Joshua woke up once last night, but otherwise seems to be doing OK. We have a busy weekend with our college students and then school starts. This week looks to be a blur. Joshua starts school Tuesday and Bethany will on Thursday. I think Thursday I may just crash.

Thanks for checking on Joshua. Have a great weekend.

With Hope,
Janene

Friday, August 13, 2004 2:09 PM CDT

Hello Everyone,

We are finished! Day #10 was a good treatment day for Joshua. It was by far the easiest day we have seen since we started the wonderful world of antibodies. Joshua did still get 3 doses of dilaudid, but overall...it was an astonishing difference. Besides less pain, Joshua did not get any hives during the last 2 days of treatment. So...now we wait and see if by chance we might get our long awaited HAMA. Most people have no pain when they finally develop HAMA, but Joshua does do things his own way, and so I will be hoping!

Joshua recovered quickly and was even able to tell his nurse Christine goodbye. This was a sad goodbye because she and her husband and son are moving to London later this month. We will miss her kindness and care if we come back for round 7.

We ate a late lunch at Delizia's which is right around the corner from The Ronald McDonald house and we are now waiting for our car and our flight home. Today I was really wishing for an earlier flight, but I guess we'll be content to get home late tonight!

In all of our trips to NYC, we have marveled at the traffic and the fact that we don't see any accidents. That changed last night when we saw a cab driver hit a bicyclist on 1st Ave. The guy on the bicycle got up and was good and mad and things pretty much went on as normal. I was just thankful that he was OK.

Well that's about all the news I know! This mom is anxious to get home to Kansas and enjoy the privilege of sending her son to kindergarten and her daughter to 4th grade. God is good. As so many times before, I'm reminded of the need to appreciate today and to celebrate each milestone that God allows us! So, next week, we will be celebrating and loving each day we have here on this earth together as a family!

Thanks for taking time to check in on Joshua. Your prayers and support have meant a great deal to us!

With Love,
Janene

Thursday, August 12, 2004 10:03 AM CDT

Good Morning!

We're done with treatment today and Joshua is sleeping it off beside me. Today was a little more intense, but not horrible. We went back to 4 doses of dilaudid to my disappointment, but I guess we'll take what we're given:)

I'm still waiting on CT results from Dr. Kramer, and I'm very sad about some things that have been happening with a little friend here in NYC. Sitting here this morning is just plain sad. The screams all around me remind me of the monster so many are up against. Then when money and beauracracy add to that...it's a little unbearable.

Last night, Joshua and I walked down to 59th St. and 3rd Ave to Dylans Candy Bar. Joshua loves this store and we just had to stock up our candy supply:)

Today we may venture to the zoo at Central Park. We'll have to see if the rain comes this afternoon.

That's about it for now. We're flying home tomorrow at 7:30 PM. If the rain comes as scheduled, we may be very late. Thanks for checking in on Joshua, and thanks for your prayers on his behalf.

Love,
Janene

Wednesday, August 11, 2004 10:21 AM CDT

Good Morning Everyone,

8 down and 2 to go. Joshua is done for today, but is still sleeping it off here in the clinic. Today was similar, but we only did 3 doses of dilaudid today. I guess overall...that's improvement.

The CT Scan went OK. Joshua is a good scan patient and actually seems to enjoy them. I'm not sure when we will hear results. I will ask for them tomorrow.

Joshua woke up when the clowns came through the clinic today. He loves the clowns at Sloan, but is usually way drugged out by the time they come around. I think the clowns are one of his favorite things here at Sloan.

Well, we will soon be out of clinic and on our way back to The Ronald for today. We need to find something fun to do tonight cause Mom is going a bit loony in our room with very little to do.

That's all the news I have for now. Thanks for taking time to stop by and check on Joshua. It means a great deal to us.

Love,
Janene

Tuesday, August 10, 2004 9:08 AM CDT

*Joshua's CT Scan is scheduled for 8:40 AM tomorrow morning.

Good Morning,

Well, we're officially done with treatment #7 and have 3 more to go. Joshua did OK today. He did his regular 4 doses of dilaudid, but his pain continues to be much less intense than other times.

I'm still waiting on word about a CT Scan and don't know whether it will happen or not. We'll see:)

Last night, Joshua recovered fairly quickly and we took a cab up to the 86th St. area again. Joshua will go anywhere if we can go in a cab. He prefers cabs to any mode of transportation here in the city.

Tonight the Ronald McDonald House is sending people on a double decker bus tour of the city. I asked about signing up, but was probably too late. Evidently they had a bunch of folks wanting to do that.

That's about all the new news I have for now. Thanks a lot for checking in with us and for praying for Joshua especially during these 2 weeks of treatment. Your prayers continue to be our lifeline and the encouragement of our souls.

If you have a second...please pray for a little friend named Shelby. She is Joshua's age and started kindergarten yesterday morning. The only difference is that she is on hospice care and only has weeks left here on this earth. I'm sure she was as excited as Joshua is to start school and her parents wanted her to have that opportunity. Pray for her and her parents in this very difficult time. Neuroblastoma takes many children and Shelby is a precious one indeed.

Thanks for everything!
With Hope,
Janene

Monday, August 9, 2004 8:57 AM CDT

*The treatment today was much as Craig described last week's treatments. He needed 4 doses of dilaudid and could of easily used 5. He was one big hive, but is finally resting comfortably. The pain is much less as far as intensity, but lingers and lingers. Dr. Kushner is trying to schedule the CT Scan for before we leave. I'll update more when I know more. Thanks for your prayers.

Good Morning Everyone,

We're in the clinic this morning and it's very evident that it will be a long day. It's a typical Monday and things are moving very slowly. It's 10:15 AM and we're still waiting for a nurse.

We had an OK weekend. Saturday we went to St. Catherines Park by Sloan and played for quite a while. Yesterday we went to Toys R Us at Times Square and even managed to eat at TGIF in Times Square. Joshua was quite a little gentleman as he and I went into the restaraunt. He held the door open for me all on his own and told me "ladies first".

Last night, we walked way up to 86th St. and went to Joshua's 2nd favorite story "Best Buy". We found a new McDonalds and had a good evening.

I've been in NYC for 3 nights now. 2 of those 3 nights, Joshua has been up at night with some type of pain or something else. Friday night I had to give him Dilaudid in the middle of the night which is something I never have to do.

I am nervous enough to request a CT Scan this week. Our NP Linda is working on it now. Please pray that they will be able to schedule a doable scan for us. He is due for the CT Scan since our last time at Sloan the CT was cancelled and could never be rescheduled.

Joshua is not in any noticable pain during the days. It could be a million things, but any unexplained pain drives a stake through our hearts because of the realities of Neuroblastoma.

God is busy teaching me about dealing with fear and anxiety. His Word has been my source of peace throughout the uncertainties all around me lately. Only the peace of Jesus Christ truly guards our hearts and our minds. It's unexplainable and oh so very precious. Thank you Jesus!

With Peace and So Much Hope,
Janene

Friday, August 6, 2004 6:31 PM CDT

Hi All!

I made it to NYC and it was a good trip! Joshua did OK today, but had to have 5 doses of dilaudid again cause the pain went on and on! I'll update more later. They're getting ready to close for tonight.

In Hope,
Janene

Thursday, August 5, 2004 9:34 AM CDT

Good Morning!

Joshua is done with treatment #4. We're almost half done:) Craig said today was the easiest day he has ever seen. Joshua actually played his game boy advance the whole way through his treatment. He still had pain, but it was a different level of pain than we often see.

From what we hear, when HAMA is produced, the pain is pretty much all gone. So, we don't want to be too excited cause Joshua still got his regular 4 doses of medicine. There is just a noticable difference in the intensity.

Our hope is that after this treatment Joshua will be HAMA positive. We'll continue to leave that in God's sufficient hands and trust Him for the outcome...whatever that may be.

The boys ought to be back at The Ronald before noon. Thanks for taking the time to stop by and check on our son. It means the world to us!

In Hope,
Janene

Wednesday, August 4, 2004 10:21 AM CDT

Good Morning All,

Joshua is done with day #3 and it was tough. Craig said the pain never got as intense, but it just wouldn't go away. Joshua got 5 doses of dilaudid today which we usually don't like to do cause it messes up his blood pressure. Even after 5 doses, he still couldn't rest comfortably. I just spoke with him on the phone and it was about an hour after the flush and Joshua was still struggling, but by the end of our phone conversation, Craig said he was snoring. That usually means that he's finally sleeping pain free. So, I hope he can sleep a while and wake up with no pain. He will be "dilaudid nuts" for a long while with as much as they had to give him.

So overall, I'm not sure what to think! We'll just keep hoping that tomorrow will be better and that HAMA is just around the corner.

Thanks for taking time to stop by and check on Joshua. Your prayers are so important to us!

With Hope,
Janene

Tuesday, August 3, 2004 2:30 PM CDT

Hello Friends,

Joshua is now done with day 2! Today was somewhat better than yesterday as usual. He still needed 4 doses of dilaudid, but is overall doing better. It sounds like he may be recovered a lot quicker than yesterday so perhaps the guys might even make it out today. When they're in NYC together...they tend to be hermits and they love it that way! They are 2 peas from the same pod!

Joshua is now registered for Kindergarten. I am meeting with his school nurse on Thursday to discuss her medical plan for Joshua. During all of Bethany's years at Pauline, I never really got to know the nurse. I think that will change now:) It promises to be interesting.

I feel so fortunate to have such an incredible school to send our children to. The principal, teachers and staff at Pauline have been so supportive as we have gone through this journey with Joshua. I feel like they all know Joshua, and he hasn't even entered the doors as a student. Many of them have followed Joshua's story and have been praying for him and our entire family during this time. It was an incredible place to send Bethany to school and I'm excited to have the opportunity to send Joshua. Special thanks to all of you at Pauline Central who have been such a support to Joshua and all of us.

That's about it for now! The boys are resting in NYC and the girls are running around trying to get last minute things done and managing to get in a few hours in the pool:) We hope you all have a great day! Thanks so much for taking time to check in on Joshua.

With Hope,
Janene

Monday, August 2, 2004 7:41 PM CDT

Hello Everyone!

Joshua is done with Day 1 and the countdown is on. Craig reports that today went much like we have learned to expect...4 doses of dilaudid and a lot of pain. The different thing is that Joshua slept much more afterwards today. He even slept in the stroller on the way back to the Ronald McDonald House. He usually is very strung out and hard to manage due to the high doses of narcotics he gets.

So anyways, he slept a lot of the afternoon and had some pain, but overall did fine. Evidently 2 of the other Neuroblastoma kids had difficulties today during treatment. Craig said they had 2 emergencies and even had to call for a crash cart. He didn't know the outcome so I hope things turned out OK. It's scarry what these kids have to go through to try and have a chance to beat this monster.

That's about all I know for now. I am anxious to get to NYC to see Craig and Joshua. Bethany and I are doing a few projects in her room together while we're home this week. She is growing up fast and is such a good big sister.

Thanks so much for checking in on Joshua and for your prayers...especially during the next 2 weeks. We depend on them and are grateful.

In Hope,
Janene

Sunday, August 1, 2004 1:20 PM CDT

***Craig called and said they made it safely to the Ronald McDonald House. They are in Room 704. The phone number is 212-639-0704!

Hello Everyone,

Craig and Joshua are in KC waiting to take off for NYC. American Airlines had a 2 hour delay due to computer issues earlier this morning, so they should be taking off around 3:30 instead of 1:30!

As we have been doing lately, Craig and Joshua will be doing the 1st week and I will fly out on Friday to do the 2nd week with Joshua. The goodbyes are getting very old these days as is the dread with the anticipation of a very difficult 2 week treatment for Joshua.

On top of the goodbuys, Joshua was up last night with apparent abdominal pain. I couldn't figure out exactly what was going on because when Joshua is sleepy he will not tell me what's wrong. He was only up for a short time, but I'm afraid I was up a lot longer. I hope desperately that he can sleep through the night tonight. Then, I can breathe a little bit easier. It brings back all too many memories of the nights he was up with pain about a year and a half ago. Back then we thought the pain was a normal stomach ache. Little did we know that a monster called Neuroblastoma was living and growing in the little body of our 4 year old son. Now, a year and a half later...each pain reminds us of the monster and the realities of relapse.

As I lay in bed listening for Joshua last night, God reminded me once again that I have no control in this situation. I must let Him have Joshua's life and trust Him with the outcome. Then we just wait...wait and see if that outcome will be continued life here on earth with us or an early entrance into the presence of God. I believe that it's "in the waiting" that we will realize how to trust Him fully with our very souls and the souls of the ones we love so dearly!

I pray your trust in our Creator is growing as you experience His touch in your life today!

Trusting,
Janene

Thursday, July 29, 2004 10:01 PM CDT

Hello Everyone,

Just a short note to let you know that Joshua continues to do well. He is getting over his cold and is feeling fine. We started the dreaded shots for NYC yesterday. We have 2 down and 15 to go. Uhg!

Craig and I are leaving for Salina tomorrow for a overnight retreat with the Ministry Team for our collegiate ministry at Washburn. Bethany and Joshua will be staying in Melvern with Grandpa and Grandma until Saturday afternoon.

We will get home on Saturday afternoon and pack quickly for Craig and Joshua to leave for NYC on Sunday. We are dreading another treatment, but incredibly grateful that we are still here and fighting!

Thanks so much for your prayers on Joshua's behalf. We appreciate each of you more than we can express!

In Hope,
Janene

Wednesday, July 28, 2004 10:51 AM CDT

Good Morning!

Joshua is doing fine! He continues to fight his cold and hopefully is on the mend to leave for NYC on Sunday. He is happy and seems to be glad we are home together!

On Monday night I had the extreme privilege of going school shopping with Joshua. He will be starting Kindergarten right after we get home from New York and we decided to get his backpack and other supplies now so that he could be involved. Boy did we have a great time. He knew exactly which backpack he wanted and didn't hesitate at all about picking out his other choices. I was so proud of him and was incredibly grateful for the chance to do this together. I have no idea how many years of school Joshua will have and so this night of anticipation and planning was a true treasure for this mom who so desperately wants to attend her son's college graduation.

Craig and Joshua will leave early Sunday afternoon for NYC. I will be flying out on Friday so that Craig can return Saturday. Our college ministry will be starting with a bang the weekend that Craig returns. Our students will be moving in on Sunday so Craig will be busy from the time the plane touches down in KC until the semester is in full swing. It promises to be a facinating year and a true gift as we have the privilege of investing in the lives of college students who will impact their communities and our entire world for Jesus Christ.

Thanks for checking in on Joshua and for your support and enouragement as we continue this journey by his side.

For His Glory,
Janene

Sunday, July 25, 2004 8:36 PM CDT

Hello Everyone,

What a week it has been! Craig and I left on Thursday morning for the Children's Neuroblastoma Cancer Foundation's yearly conference on Neuroblastoma. It was held in Chicago and was a wonderful experience for us. Once again, we were able to hear from many of the top NB doctors from across the nation as they spoke on many important topics. We learned a lot and had a chance to meet and connect with some of our old and new friends who are also on their own NB journey.

The kids stayed home with my mom and my sister and had a great time. They got to finish the last 2 days of Bible School and also had a lot of time to play with Grandma. Joshua developed a cold sometime during the last few days, but is hanging in there. Believe it or not he has not had a cold since before he was diagnosed with cancer. It will be interesting to see how he does since his immune system is still low post transplant.

We got home tonight and I was so excited to see Bethany and Joshua. I am again reminded of the gifts I have been given and how complete I am when we are together as a family. I am also very thankful that Joshua is feeling well, despite having his first post treatment cold.

Please pray that he would get over it quickly because we have one more week before heading back to NYC. We actually start the shots this Wednesday in preparation for leaving Sunday. I am hoping his cold is better by then.

Well that's about it for now. We are home, together and grateful. Thanks for checking in on Joshua and for your continued prayers on his behalf.

In Hope,
Janene

Monday, July 19, 2004 1:01 PM CDT

Hello Everyone!

Hope all of you had a great weekend. Joshua, Bethany and I spent ours in Newton visiting with my mom and sister and nephews again. Chuck E Cheese and Toys R Us were on the agenda Saturday because my sister's family has neither in Quito Ecquador where they live. The kids had a ball.

Joshua is feeling well and enjoyed his weekend very much. This morning he and Bethany started Vacation Bible School at church and they both had a wonderful time. Joshua was nervous at first, but by the end told me that he needed to come back to VBS tomorrow or else he would be very very sad. I'm so thankful for the opportunity he has to attend a VBS, and spend a week learning about God loving him and desiring a personal relationship with him. At this point, Joshua understands bits and pieces, but hasn't put it all together yet for himself. We pray that soon that will happen!

While we were driving to Newton and back to Topeka, we listened to a children's tape with some very lively music that both of my kids just love. I love the songs on this tape, but was surprised by my sarcastic spirit on one particular song. The song in question had the following lyrics:

"This is the good, good life...Jesus loves me this I know"

I was immediately filled with thoughts of how awful my life is living with Neuroblastoma and the probability of watching my son die.

Then in a still small voice, Jesus reminded me that the second part of that phrase contains the reason why we have a good, good life. He said to me..."yeah I know your life is difficult, but it is very, very good simply because I love you".

I was once again reminded that God loving me far exceeds the pain of this life. He wants me to fully comprehend his love and to value and treasure it instead of focussing on what I don't have. He was saying "Janene, my love is enough!"

I John 3:1
How great is the love the Father has lavished on us, that we should be called children of God! And that is what we are! The reason the world does not know us is that it did not know him.

Thanks so much for checking in on us and for your continued prayers on behalf of Joshua. I pray His love astounds you today as you face the uncertainty of tomorrow.

Only By His Love,
Janene

Thursday, July 15, 2004 9:28 PM CDT

Hello Everyone,

Joshua had a pretty good day today and continues to feel well. He and Bethany and I drove to KC early this morning for his clinic appt. which was uneventful. (Except Mom forgot the emla cream and the nurse didn't leave it on long enough so the accessing hurt)

Afterwards, we went to Fritz's, Joshua's favorite train restaraunt right across the street from Children's Mercy. We had a pretty good time and got home in the early afternoon. Then came swimming and playing outside. I guess a pretty typical Summer day for most kids! Joshua was tired tonight after all that.

Well, that's the news for now. I would like to ask you to pray for a special family. Michaela passed away from Neuroblastoma last night after a valiant battle. She leaves a mom and dad and 2 brothers who are facing the pain of their lives. Please pray for this family as they go through the next days! They fought long and hard and now have to say goodbye.

Thanks for your prayers for Michaela's family and for Joshua. God blessed us by giving us so many incredible prayer warriors for our son as he fights this battle. Thanks for all you do.

In Hope,
Janene

Monday, July 12, 2004 4:01 PM CDT

Hello Everyone,

What a busy time we have had. My sister flew in from Ecquador and it has been a mad rush around here. Joshua and Bethany have each enjoyed a lot of time to play with their cousins. It is so much fun to watch them together. Since the boys live in Ecquador, my kids really value the days they can play with David, Joel and Luke.

Joshua continues to do well. He is pain free and almost pill free. We will be starting his last round of accutane here in the next few days. After that, we will be very close to no pills. That will be quite something for Joshua.

We have a clinic appt. on Thursday to flush his medi-port. Besides that, there's just no new medical news to report. You can't even begin to imagine how much gratefulness I write those words with. I truly treasure each day without pain, without cancer and without hospitals. I know these days can easily be gone without a moments notice, so I resolve to enjoy today.

Today Joshua got a present in the mail. It was a medal of courage from an organization called Giant Kids. The words on the certificate are as follows:

_________________________________________________

Giant Kids awards this gold medal for enduring courage to a kid with the heart of a superhero!

Joshua Freerksen

Your courage lifts up those who love you, giving them strength to follow you on your journey to wellness. Although your path was often difficult, your brave spirit shone brightly for all to marvel at your victory. And while your footsteps may be small, they leave behind the FOOTPRINTS OF A GIANT!

__________________________________________________

well my little giant was very proud to receive a gold medal in the mail. In the days to come I have the incredible opportunity to explain to him what courage truly means. The fact that he exemplifies this characteristic without understanding anything about it, is a tribute to the hand of God on His young life. Someday soon, he will understand more about what God has given him and what He is doing through him, but I'm more than convinced that we won't know the whole story until eternity. So for now, we wait with expectation!

Thanks for checking in on Joshua and for your continued prayers on his behalf.

With Love & Gratitude,
Janene

Wednesday, July 7, 2004 7:35 AM CDT

Good Morning!

Joshua continues to do well! Yesterday he and I traveled to KC. First we went to the dentist and Dr. Jennifer looked at all of the crowns and fillings and said everything looked good and was healing well. Joshua did a spectacular job and didn't want to be done when it was over. We'll be seen again in January.

Then we went to the airport to pick up Kristi and the boys who were arriving from Quito Ecuador. I was so thankful that we weren't flying yesterday. It was wonderful to go to the airport to pick up my sister instead of the usual dreaded trip to NYC.

Well anyways, Joshua was so excited to see David, Joel and Luke. It had been 2 years since we stood and cried in the Wichita airport and said are final goodbyes. The boys ran out and Joshua almost immediately re-connected with Luke. I think they will have a lot of fun in the next weeks. Joel and Joshua both have a love for video games, so I'm sure they will be playing gameboy together.

We went to Fritz's at Crown Center and met Nette before coming home. Joshua loved showing the boys "his" train restaraunt.

Well, that's about all the news I have for now. Thanks so much for checking in on Joshua.

Love,
Janene

PS HAPPY BIRTHDAY GRANDMA MYRLE! WE LOVE YOU!

Monday, July 5, 2004 8:44 AM CDT

Good Morning!

Joshua is doing well and we had a great weekend. Yesterday we ended up at Eric's Fireworks stand and the kids got excited about doing fireworks. So, we bought a few and made the trek down to Melvern so we could have a yard to do them in. Our South Village doesn't allow ANY fireworks:(

Bethany and Craig had a ball. Joshua didn't. He was still terrified of everything...even sparklers. I hope we have the gift of another year with him, because by next year...I have a feeling that things might be different. He may be fighting dad for "fuse duty".

So anyways, Joshua watched TV and fell asleep inside with Grandpa John, while we watched the Fireworks. All in all, it was about what we expected. Bethany had a great time!

Well, that's about it for the weekend. I will treasure forever weekends like we just spent, because we were together in this great adventure. Sometimes sad...sometimes silly, but always learning and growing together. What a gift that is!

Have a wondeful week! God bless you as you seek to live it for His glory!

With Love,
Janene

Saturday, July 3, 2004 2:16 PM CDT

Hello Everyone and Happy 4th of July Weekend:)

Joshua is doing well! He seems to be gaining his energy back more slowly this time, but he is making progress. We only have 2 medical appointments this month, so he will continue to have time to regain his strength.

On Tuesday, we will visit the dentist for a checkup after his procedures. Also, we will have to have one more clinic appt. in KC mainly to flush his medi-port. Both of those appointments ought to be very simple. Joshua would prefer to spend the rest of July in the swimming pool.

As a matter of fact, that's where he and Craig and Bethany are as I type. They are at the YMCA at Joshua's favorite pool, having a blast I'm sure. Joshua is very proud of his progress with swimming, and is doing a great job.

Last night we went to Melvern and got to spend some time with Craig's family including Uncle Earl and Aunt Phyllis. We had a wonderful time and only got rained on once:)

This coming week will be a busy one for us. My sister Kristi (Ecquador) is coming to the States for 2 weeks and is arriving this Tuesday. She is bringing all 3 1/2 kids with her while Scott stays in Quito with his teaching responsibilities. So..things will be hopping for a while.

Thanks again for checking in on Joshua. We didn't get our HAMA phone call which means we are headed back to NYC for round 6 the first 2 weeks of August. We are going one week early so that Joshua will be home to start Kindergarten on August 17th.

I hope you all are doing well and that you and your families enjoy The 4th.

Love,
Janene

Wednesday, June 30, 2004 10:55 PM CDT

Hello All!

We had a good day today. Joshua got to play with Sarah and Jonathan which is always a hilight. This evening, he and Bethany spent hours playing together. I love those times so very much. I can work and listen to them play together, and it reminds me of what's important.

Joshua was supposed to go back to the dentist tomorrow for his 2 week check up after surgery. We postponed it til next week because we have a funeral in the morning. Craig's cousin Joe Dix from Lawrence had a 2 month old little girl who passed away on Sunday. Bailey's funeral is tomorrow morning in Perry. Please pray for their family as they are experiencing the grief and pain of losing their precious daughter.

Other than next week's dental appointment, Joshua doesn't have much medical stuff going on. That makes us very happy:) We plan on spending July playing and being a family.

Thanks for checking in on Joshua! You all are the best and I want you to know how much you mean to us as we continue this journey.

With Love and Gratitude,
Janene

_______________________________

Thanks For Baby Jesus!

This evening I had a wonderful time with my children. We spent the better part of an hour right before bed learning and singing Sunday School songs from a book I had almost forgotten about. Bethany and I taught a lot of them to Joshua and he loved them. We even did a few actions and I realized again how precious each minute and each opportunity is with the precious souls who have been entrusted to me.

When we got done singing, we started to pray. I explained to them about our cousin’s little baby named Bailey who died this week. We talked of Bailey being in Heaven with Jesus and a lot about what Heaven must be like. I encouraged them to pray for Bailey’s mommy and daddy as they would probably be very sad after losing their baby girl.

Bethany prayed first and prayed for the family. I did the same and then it was Joshua’s turn. I waited, not knowing what to expect from Joshua since I often doubt how much he comprehends about God, Heaven and eternity. Joshua prayed and thanked God for Baby Jesus. I thought immediately that Joshua got “Baby Jesus” and Baby Bailey mixed up. He finished praying and it struck me that his prayer held much truth. I said “Joshua you are right…because God sent Baby Jesus, Baby Bailey can live in Heaven with God”. My son just looked up into my face and said “that’s what I said mommy”.

As usual, Joshua has the perspective I should. I was sitting there worried and sad about Bailey’s mom and dad and the pain they are in. Joshua, on the other hand, was just grateful…grateful for the eternal hope we have been given because God sent his only son as a little baby to this world. Because of Jesus, we have the hope of heaven and eternity with God. Thanks Joshua for reminding me that hope outweighs the pain and grief of death. And finally…Thank you God for Baby Jesus!

Tuesday, June 29, 2004 3:59 PM CDT

Hello All & Happy Tuesday!

______________________________

Isaiah 54:10
Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed, says the Lord, who has compassion on you.

______________________________

Mud Baths and Bunk Bed Wishes...

Joshua has had a good few days. Yesterday he took a bit of a bath in our HUGE mud puddle that is behind our shed with Bethany, Sarah and Jonathan. By the time I found them, they were covered pretty well and had decided to paint the shed brown. After I hosed them off enough to get them into the bathtub, Joshua smiled at me and said "mommy, it's fun to play in the mud with our friends". I had to agree, but it sure made a lot of extra work for mom.

Today, Joshua spoke with his Kids Wish Coordinator from Kids Wish Network. She called from Florida and spoke with him over the phone to find out what his #1 wish was. As usual, Joshua continues to be unique. Most kids ask for a trip to Disney World or Disney Cruise, but our Joshua is getting a bunk bed. He hasn't changed his mind once since we started talking through the whole wish thing. He was bound and determined that a bunk bed was the best thing in the world. So...we will anxiously await a new bunk bed for an excited little boy.

Today Joshua's HAMA test was done in NYC. We haven't heard anything yet, but would really love to in the next day. We will hope for HAMA even though we are doubtful due to the pain he experienced.

That's all for now. Thanks again for checking in on Joshua and for continued prayers on his behalf.

Love,
Janene

Sunday, June 27, 2004 4:51 PM CDT

Hello Everyone,

Joshua has had a good weekend. He seems to be feeling well, although doesn't seem to have the energy I had gotten used to seeing lately.

Friday we heard that Joshua's CD4 count is 221. That means we can stop taking our blue pills which is a big thing cause we had to take 4 a day. We should hear Tuesday or Wednesday of this week if he has developed HAMA.

This weekend has been a quiet one for us. We have enjoyed the lack of business immensely. This evening, Craig is taking both of the kids to see Shrek II. The kids and I saw it a few weeks back, but this will be Daddy's first time. He made Bethany promise not to tell him what was happening all the way through the movie:)

I don't have much other medical or other news at the minute. Joshua is well today and we are incredibly grateful for all we've been given. I hope today finds you treasuring the blessings of your life in new ways. Thanks for stopping by to check on Joshua!

With Love & Gratitude,
Janene

Thursday, June 24, 2004 3:38 PM CDT

Hello Everyone!

Joshua is doing better today! I think he is starting to finally feel more normal after his teeth surgery/procedure thing last Friday. It has been great to hear his laugh again:) I miss that when I don't hear that very regularly.

Joshua and I went to The KC Clinic this morning for regular blood work. He had a CBC, HAMA blood draw and his Extended Immunce Deficiency Panel done...and his medi-port flushed. It all took about 1 minute and Joshua was excited because his cousin Tim got to come with us. It was fun for Joshua to bring a friend his age into his cancer world for a change. We should hear early next week about whether he has developed a HAMA and the level of CD 4 cells in his body after his transplant. We are hoping to hear HAMA and a CD4 count of over 200. We should be able to discontinue one of our meds when he hear that magic number:) And of course, when we hear HAMA, you might just hear the roar of celebration from 131 SE Willow Way in Topeka cause that would be the end of antibody treatments and we would be celebrating in the streets:)

So, for now we wait and enjoy today. We understand all too well that the days are indeed precious and a true gift from God. This mom for one intends to get some smiles and laughs out of the best son and the best daughter in the whole wide world:)

I hope you too can enjoy today and use up every minute wisely. We appreciate your prayers and ask that you pray also for Michaela, Simon and Paige and their families. They are 3 friends of ours who are coming close to the end of their battles with Neuroblastoma. 3 precious children and 3 families who love them dearly are struggling to cope with the realities of pain and death. Thanks for your prayers on behalf of those in unimaginable pain. Thanks also for checking in on our Joshua and for your continual encouragement and support.

For His Glory,
Janene

____________________________________
Wounded Warrior

I watched from afar last Saturday night as the little boy rode the carnival ride. He seemed to be trying to enjoy the airplane ride, but I could tell he had been through a lot. He would smile and toot the horn and then grimace with pain. As I looked closely at him, there were signs of a battle…scars if you will. He looked to be a warrior…a wounded warrior. He seemed tired and his energy seemed so far away. Yet, as I looked closely into his eyes, that sparkle would shine through every now and then. The people around me didn’t even notice this little wounded warrior trying so hard to be a little boy. But I, I was mesmerized by him. My eyes followed him round and round and my heart wanted desperately to take the battle away from him. It seemed too much for a little boy to handle! Soon, the ride stopped and the little boy climbed off the airplane with much effort. He turned and smiled at me and said “Mommy, that was fun”. My wounded warrior took my hand and we walked hand in hand to the next ride, once again partners, teammates if you will in this battle to the death.

Monday, June 21, 2004 9:48 AM CDT

Good Morning and Happy Monday,

Well, we made it through a busy weekend and Joshua is hanging in there. He still looks pretty beat up after the dental surgery, but he is eating and not experiencing too much pain.

We have spent much of the last few days in Melvern for "Fair Days". Craig's family has been together and the kids have played and played and played. We have had a good time...but boy are we tired:)

Medically speaking, we have a HAMA blood draw coming up later this week. Other than that...there's not a lot medical going on. We have one more week of accutane and we will be done with round 5.

That's about it for now. I thank you for taking time to check in on my son! Your care and concern mean a great deal as we continue down this road.

With Love and Gratitude,
Janene

Saturday, June 19, 2004 8:29 AM CDT

Good Morning!

We're cheering around here because yesterday is over. Joshua's teeth procedures took about 3 1/2 hours yesterday. He woke up and was a mess! I now know from a lot of experience that when the recovery room nurses come and get mom quickly that means "help, your son is very mad".

When I got to Joshua, he was so upset. His mouth hurt, he had an IV, and he looked like he had just lost a fight with a monster. They quickly gave him 3 doses of fentanyl and then got ready to release him to me and said Tylenol should do it. I said "are you sure?" They assured me that nobody else ever needed stronger narcotics after these types of surgery. So, we went. By the time we got to Belton to pick up Bethany, Joshua was in a lot of pain and feeling miserable. I gave him Tylenol and in about 15 minutes, he was eating ice cream and laughing. I'm starting to think that Fentanyl does nothing for him. He also had that narcotic after his huge surgery in NYC and experienced much uncontrolled pain until we started the morphine pump.

So anyways, he had an OK evening and night. I've been giving him tylenol regularly and one dilaudid dose. He slept fairly well and woke up with some pain, but very swollen and sore looking. Now, we just are hoping for a quick total recovery, but are so grateful that yesterday is done.

Bethany spent the day with Carrie and Nette in KC. She had fun with them and we're so grateful she had that opportunity. I'm not sure what we have going today. We'll just wait and see how the little man is feeling.

Thanks for checking in with us and for your continued prayers on Joshua's behalf.

In Hope,
Janene

Friday, June 18, 2004 0:02 AM CDT

Hello Everyone!

Well it's late on Thursday evening...actually Friday morning. In a few short hours, we'll be on our way to KC for Joshua's dental procedures. He will be under for about 3 hours and will have a ton of work done. Please pray that Joshua would recover quickly and that the crowns and fillings he receives would not cause issues for him after surgery.

Today was a fun day for Joshua and Bethany. They went to Jonathans' birthday party and then to Melvern for the carnival. It was arm band night so they could ride rides all evening for one price. Joshua was nuts! He went back and forth for hours from the ferris wheel to the airplanes to the jumping bubble. He loved it and had a blast. He also enjoyed playing with Rebecca and Tim. Our cousins from Maryland are here and it has been fun to reunite.

My heart is sad tonight. One of our friends with NB died today after a 5 year battle. Also, another friend from the Topeka area found out today that he has relapsed with Leukemia. Life is just so incredibly hard. Please pray for the families of Becca and Daegan. They are in so much pain this evening and I pray God's peace would be abundant as they face the coming days of uncertainty.

I'm reminded yet again that we are a vapor on this earth. Life is over in a breath and eternity is upon us. We have no promise of tomorrow, but only today to determine what our eternity holds. I pray you know the hope and peace from the assurance of a personal relationship with Jesus Christ. He holds the future and He holds our very lives. I have found him faithful to that end. I know you will as well.

For His Glory,
Janene

Tuesday, June 15, 2004 10:56 AM CDT

Good Morning All!

Joshua is having a good week and continues to feel great! He is wanting to go swimming constantly and got to swim at the YMCA last night. He is getting braver and making up for lost time in the water:)

Joshua's dental procedures will take place this Friday. He should go under at around 10:00 AM. They are expecting the procedures to take around 3 hours. We are looking at 8 crowns and many fillings. It promises to be interesting.

That's about all the news I have for now. Thanks again for checking in on Joshua!

Love,
Janene

Sunday, June 13, 2004 9:29 PM CDT

Hello Everyone,

We made it home around 11:00 AM yesterday. That flight from NYC is a little too early for us:) I think we'll plan on flying Friday night from here on out.

Joshua is doing well. He started round 5 of accutane this morning and will be doing that for the next 2 weeks. He was so happy to land in KC yesterday morning. When I told him that we were ready to land, he said "So mommy, now I can be happy?" We both appreciate home more than ever before these days.

Today we spent a good day with Craig's family. The kids played at the new playground in Melvern and had a blast. Joshua fell asleep on the way home and will undoubtedly sleep in at least a few minutes tomorrow morning after such a busy weekend.

Today we begin our 7 weeks at home. We are grateful to God for allowing us the blessing of another reprieve. As usual, we don't know what tomorrow holds, but are incredibly grateful for today and the sweet mercies that surround us.

With Love & Gratitude From HOME!
Janene

PS Thanks for checking in on Joshua and for your prayers on his behalf during these last few weeks. We thank God for your partnership as we continue this journey.

Saturday, June 12, 2004 12:06 AM CDT

We're Home! We're HAPPY! Joshua is doing well:)

I'll update more later!

Love,
Janene

Thursday, June 10, 2004 2:12 PM CDT

Hello Everyone!

We are down to one more treatment! Today went Ok! It was pretty much like the other days. Lots of medicine and lots of pain. We are happy to be almost done.

Last night, Joshua and I went to Central Park and played a while. We found a couple playgrounds and drove the remote controlled boats on one of the lakes in Central Park.

Tonight, we will probably walk toward 86th St. It is a little cooler today which will be nice. Our flight is at 6:45 AM Saturday morning. We're anxious to be home.

Thanks for checking in on Joshua and for your continued prayers on his behalf.

Love,
Janene

Wednesday, June 9, 2004 1:18 PM CDT

Hello Everyone!

We're down to 2 more days of treatment and counting:)

Today was OK. Joshua's pain was a little less severe, but he still needed 4 doses of dilaudid. He got a major case of hives again, but was released around 11:00 AM. He has been enjoying the game room in the basement this round and also has been quite happy to venture out in the evenings.

Last night, we managed to ride a mini-van cab. Joshua had been eyeing them all week and was thrilled when I finally got one. That simple cab ride made his week I think!

I don't know much else to report so I'll just say thanks for checking in on Joshua and for your prayers.

Much Love From NYC,
Janene

Monday, June 7, 2004 3:46 PM CDT

Hello Everyone!

Well we only have 4 days of pain left, and I am excited. Today's treatment was about par for the course, but 5 doses of dilaudid shows that the pain isn't diminishing like we would wish. It is nasty, horrible and ugly! I just hold him and pray it will be over quickly.

It is now almost 5:00 and Joshua slept and is doing better. We may venture out this evening back to Central Park since we didn't get to have the promised Carriage Ride with Bethany and Daddy!

We're on the countdown and can't wait to be home. Thanks for checking in on Joshua and for your continued prayers on his behalf.

Love,
Janene

Sunday, June 6, 2004 4:20 PM CDT

Hello from NYC!

We are almost to the end of our weekend and we are a bit sad. It has been great to spend this time toether having fun!

Bethany and I arrived about 10:30 PM on Friday evening and we stayed up very late that night. The kids were so excited. On Saturday morning, Joshua woke up first thing and said "No hospital today mom???" He was so excited to have some days for fun instead of pain.

Yesterday we took the bus up to 86th St. and ate at a Pizza place. We then went to Central Park and played a little and saw the Statue of Balto again. At 3:00, we met our friends Susan and Nathan at the Zoo in Cental Park. Nathan showed us around the zoo and the kids enjoyed seeing the Sea Lions eat and do tricks.

This morning, we ate brunch at a diner just down the street from us and took the subway to Times Square. We had to stop on the way and get a few jackets and sweatshirts because we came very unprepared for rainy and cold weather.

Joshua hasn't used the stroller all weekend. We have been amazed at his stamina and energy levels. We are so thankful for that and pray it continues. We spent quite a while at the Toys R Us in Times Square today and even stood in line for the ferris wheel inside. Then we had to go to the 3 story McDonalds on 42nd and get McDonuts, and that was about all she wrote.

We are not really looking forward to tomorrow except that it means we are closer to being home. Only 5 days of pain left and we will be home. Thanks a lot for checking in on Joshua and for your continued prayers on his behalf.

Many hugs and much gratitude from NYC!
Janene for the 4 of us:)

Friday, June 4, 2004 8:30 AM CDT

*We got word this morning that Joshua's MIBG scan was clean! Yippee! 1 scan down and 2 more to go:)

Good Morning Everyone,

Craig and Joshua are starting the last treatment for this week as we speak. Joshua has done OK this week, but it has been a bit tough. During the late afternoons and evenings, he has recovered well and they have been able to venture out some. We are very grateful for that.

Yesterday, Joshua did very well for his MIBG scan. We hope to hear some results from that today and are still waiting for the schedule for his CT Scan.

Bethany and I fly out this evening. We are both excited to get to NYC and see Craig and Joshua. I'll update more from there.

Thanks a lot for checking in on Joshua. We love you and wish you all a great weekend!

In Hope,
Janene

Wednesday, June 2, 2004 9:30 AM CDT

Good morning!

Craig called and said Joshua is done with his treatment and resting almost comfortably. He said it was much better, but Joshua still had 4 doses of dilaudid and they considered the 5th. It is simply a wickedly painful treatment that we hope desperately is working to keep Joshua in remission.

Tomorrow is Joshua's MIBG scan. They are still working to schedule his CT Scan since we had to cancel the one for Tuesday. Please pray for strength for dad and mom as we go through the waiting and questions scan days bring.

Thanks so much for checking in with us and for your continual prayers and support for our family. We love you and are eternally grateful to each of you.

With love & gratitude,
Janene

PS Our little friend Brice who also had NB 4 died on Monday. He was diagnosed a month after Joshua and relapsed on May 7th. He was 1 1/2 years old and a very special child. We got to know them in NYC and can't imagine the pain they are going through. Please pray for his mom and dad and big sister as they go through these most difficult days without their son and brother.

Tuesday, June 1, 2004 11:22 AM CDT

Good Morning!

Craig and Joshua made it NYC and are in room 508. The phone number to the room is 212-639-0508.

Craig just called and said Joshua is finally sleeping after the 1st treatment. It sounds like it was horrible pain wise. He got 5 doses of dilaudid to combat the pain that sounds like it rivaled our very first week of treatment.

They will soon be going back to the Ronald McDonald House and I hope he can be pain free. He will be good and out of it for several hours due to all the dilaudid. Thanks for your prayers on Joshua's behalf as he goes through these difficult weeks of treatment.

I'll update more tomorrow!

In Hope,
Janene

Monday, May 31, 2004 1:41 PM CDT

Hello Everyone!

We had a great day yesterday being together as a family. We so much enjoy going to church together. Bethany and Joshua usually have been spending the worship hour in Children's Church, but yesterday were able to join Craig and I as our church changes to their Summer schedule.

I think one of my favorite things in the whole world is hearing my children worship God. There is something so incredibly precious about hearing those you love most in the world sing to their Creator, and yesterday was one of those moments for me.

As we sang, I was blessed to hear the little voice of my 5 year old son singing beside me. He doesn't sing often, but when he does...he does so with all the praise he can find. "God of wonders beyond our galaxy, You are Holy, Holy. The universe declares your majesty. You are Holy, Holy. Lord of Heaven and earth." As I listened, Joshua sang. He blessed my heart by offering such simple praise. While my eyes so often look to the uncertainties of the future, Joshua was content to sing to God and praise Him for today. I wonder what God's heart does when a little child who has been fighting the battle of life and death takes time to call Him Holy? I bet He is pleased. Perhaps my worship would be more pleasing if I could get my eyes off of myself long enough to call Him Holy and recognize the beauty and righteousness of the one who is called "I AM".

___________________________________

Craig and Joshua are presently in the air somewhere between Atlanta and NYC. They had several weather delays, but seem to be making it OK. Joshua will start his 5th round of antibodies tomorrow morning. Thanks for your prayers for him as he starts these most difficult weeks.

In Hope,
Janene

PS Bethany and I are flying out on Friday! I'll be with Joshua during the 2nd week.

Friday, May 28, 2004 9:59 AM CDT

Hello Everyone,

Happy Friday and Holiday weekend to all of you:)

Joshua continues to do well. We are thankful for each day! He went swimming yesterday for the first time in about 2 years. He had so much fun that I decided we did the right thing with getting a medi-port. He surprised me by his love for the water and I now know that his fear of water is only because of the dressing changes and pain that have accompanied getting wet during these past months. I don't think he has any memory of swimming before cancer.

Craig has been gone all week at O-Week in Salina. FOCUS International is the Missions Organization in our area that sends college students overseas on short term mission experiences. Craig has participated in their Orientation week for the Summer and has had a very good week. We look forward to him coming home tonight and sharing all that God did and is doing in regards to 200+ students sharing Christ all over the world this Summer.

Bright and early Monday morning, Craig and Joshua will leave for NYC. Treatment starts on Tuesday due to Memorial Day Weekend. Bethany and I will go late Friday so that we can get some family time in over the coming weekend. Then, Craig and Bethany will fly back Tuesday and I will stay and finish with Joshua. Joshua and I will fly home very early Saturday morning. Because of all the switching, airline tickets were quite a puzzle this time around.

Please pray for Joshua as he begins round 5 of antibodies at Sloan Kettering. It is such a long and painful 2 weeks for him and I so wish we were done with this leg of the journey. When he develops HAMA, we will be finished and we are very anxious for that time.

I don't think I have much other news for you all. We are looking forward to being home again the 3rd week of June and will be home until August. From the way yesterday looked, we will probably be swimming a whole lot in July.

Hey, thanks so much for checking in with us and for your continued prayers on behalf of Joshua. We appreciate each of you so much and thank God for you.

With Love & Gratitude,
Janene

Tuesday, May 25, 2004 8:34 PM CDT

Good Evening Friends and Family,

Just wanted to write a short note and say that Joshua continues to do well. We are starting our beloved GMCSF shots tomorrow for next week's treatment in NYC, and are still working on airline tickets to get there.

The dental report is horrible at this point and we will be having major repairs done on June 18th. It makes my mouth hurt to think about it. I believe we are at 7 crowns now and about 8 fillings. We did find a wonderful pediatric specialist in KC who is helping us. The procedures will be done at Children's Mercy in the O.R.

Next week at Sloan, we will be having Joshua's next set of 3 month scans. The tension is building as we watch friends all around us relapse. We resolve to not live in fear, but are weary of standing on the battle line.

I am thankful that Joshua lives blissfully unaware of the realities of Neuroblastoma. He continues to enjoy each day and love on as many people he can. As usual, he's my shining example of how to deal with difficult days.

This evening, Joshua came and got me and said "mom, do you want to come see my picture?" As usual now, I said "yes Joshua" while I got up and walked in the other room to admire his masterpiece. Every single time he asks me to come see something or do something with him, I simiply cannot say "no" to him. I always think to myself "Janene, you don't want any regrets".

It didn't used to be like that. I used to be be too busy and too selfish. I thought that I was guaranteed tomorrow, but I was so wrong. I am thankful to live life from this perspective, but wish hard that the pressure would lessen. Even so, I recognize that the pressure is part of my journey to the heart of Jesus. It's the only road that leads me to the place He desires. I know it's worth the journey, but only pray for the strength to get there.

For His Glory,
Janene

Friday, May 21, 2004 11:20 AM CDT

Good Morning!

What a week this has been! Monday's surgery to place the medi-port went OK! It was tramatic in view of Joshua's anti-I.V. philospophy, but it is over with and relatively easy.

We went nuts trying to plan and have a great birthday party for Bethany. It was well worth it because both kids had a wonderful time all day yesterday. I haven't seen Bethany that happy for a long time.

Joshua played so hard and had a blast doing mini-golf. He was so sweet to Bethany yesterday and just wanted to help her have a great birthday.

So, that brings us to today. We are tired and digging out of a mountain here at home. We are so grateful for how well Joshua is feeling and continue to rejoice in each day.

Thanks so much for checking in with us. You have a great weekend!

In Hope,
Janene

Wednesday, May 19, 2004 8:03 PM CDT

Hello Everyone,

Joshua continues to do well! Today he and I went to KC to take some thank you gifts to some special children at Harrisonville Christian School who have been some of Joshua's most faithful prayer warriors. He enjoyed the trip and the chance to see Nette and Carrie as well!

Tomorrow is our dreaded trip to the dentist. Mom is dreading that more than Joshua at this point. I hope and pray that he needs less work than we think. Tomorrow is also Bethany's birthday. Our sister will be 9 tomorrow and we are going to celebrate! Joshua gets so excited when it is someone's birthday. It promises to be a great day.

That's all I know for now. As always, thanks for checking in with us and for your continual prayers on behalf of Joshua.

For His Glory,
Janene

Tuesday, May 18, 2004 12:36 AM CDT

Just for this morning, I am going to step over the laundry, and pick you up and take you to the park to play.

Just for this morning, I will leave the dishes in the sink, and let you teach me how to put that puzzle of yours together.

Just for this afternoon, I will unplug the telephone and keep the computer off, and sit with you in the backyard and blow bubbles.

Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck, and I will buy you one if he comes by.

Just for this afternoon, I won't worry about what you are going to be when you grow up, or second guess every decision I have made where you are concerned.

Just for this afternoon, I will let you help me bake cookies, and I won't stand over you trying to fix them.
Just for this afternoon, I will take us to McDonald's and buy us both a Happy Meal so you can have both toys.

Just for this evening, I will hold you in my arms and tell you a story about how you were born and how much I love you.

Just for this evening, I will let you
splash in the tub and not get angry.

Just for this evening, I will let you stay up late while we sit on the porch and count all the stars.

Just for this evening, I will snuggle beside you for hours, and miss my favorite TV shows. Just for this evening when I run my finger through your hair as you pray, I will simply be grateful that God has given
me the greatest gift ever given.

I will think about the mothers And fathers who are searching for their missing children,the mothers and fathers who are visiting their children's graves instead of their bedrooms, and mothers and fathers who are in hospital rooms watching their children suffer senselessly, and screaming inside that they can't handle it anymore.

And when I kiss you good night I will hold you a little tighter, a little longer. It is then, that I will thank God for you, and ask him for nothing,
except one more day.............

Monday, May 17, 2004 7:57 AM CDT

Good Morning!

Joshua and Craig are on their way to KC for his medi-port placement. Uhg! These weeks of being "free" were so wonderful. We sure hate to give them up:)

Hopefully, the surgery will be right around 9:15 and they will be home by noon or shortly after. The IV will be the worst I think.

Thursday this week, we will see the dentist, and we may be scheduling bone marrow biopsies yet in KC before we go back. All in all, we are on the countdown to June when we go back to NYC, and we're hoping for HAMA so these trips can be stopped.

We did have a good weekend. Joshua is feeling good and enjoyed seeing his cousin John graduate yesterday. John had 2 Joshuas graduate with him in the Lyndon class. When they called each of them to get their diplomas, my Joshua asked me if he needed to go up to the podium. He said "Is that me mom, or another Joshua?"

I hope that I get the privilege of seeing my Joshua get his high school diploma someday! Wouldn't that be something?

Love,
Janene

Thursday, May 13, 2004 10:20 PM CDT

Hello Everyone!

Joshua has had a good couple days. He is feeling good and ate like half a pizza tonight. It wasn't long ago that even one bite of pizza made him throw up.

Well our big news for the day is roller skating. Bethany's school skating party was tonight. Joshua skated for the first time. It wasn't long and it wasn't fast, but he truly skated. I sat and watched him and Craig on the skate floor and had to wonder at the miracle before me. The place was fairly crowded, but I imagine that nobody else there realized the miracle unfolding before their eyes...a little 5 year old boy inching his way around the rink for the very first time. We've come a long way by God's grace and I am thankful for the many miracles that testify loudly to the grace we have been given.

We have a weekend full of graduations coming up. Washburn's graduation will take place Saturday. We have 3 students graduating this year which is exciting. On Sunday, our nephew John is graduating from Lyndon High School. We will be celebrating with all of them this weekend, before Joshua's line placement Monday morning.

On the prayer side...I would ask you to remember 2 special friends we met in New York City. Joshua Y. has recently relapsed and is starting another leg of this journey. He and his family have an incredibly difficult road ahead. Brice K. is another friend who has recently relapsed. He is 1 year old and just learning to walk. His family found out about his relapse last Friday and have been given a couple months with him. I can only imagine the difficulties and pain they are experiencing. We are so thankful to each of you who so actively pray for our son. Please join us in lifting up these friends who are going through the darkest days.

I don't have much other news. As always...we love you and thank God for you. Your support and prayers make it possible for us to keep walking this uncertain path. Thanks for checking in with us today. God bless you as you passionately pursue the things in this life that will have eternal significance.

For His Glory,
Janene

Monday, May 10, 2004 2:24 PM CDT

Hello Everyone,

Thanks for checking in with us today! We had a good Mother's Day weekend and traveled to Newton and Melvern in order to spend some time with each of our moms. Joshua and Bethany were both feeling great and ended up having a lot of fun.

Today Joshua and I are home trying to get some things done after a busy weekend. We are thankful that he continues to feel well. His strength and stamina are increasing slowly and his eating is improving. What a blessing those things are:)

Wednesday, Joshua will see the pediatric dentist who will make recommendations about his teeth. Next Monday is the day that Joshua will have his medi-port placed. Then on June 1, we will start our 5th round of 3F8 antibodies in NYC. No matter what happens, Craig and I will always remember these 8 weeks as our reprieve. We've been able to be a family again after a very difficult year. Everyone has felt great and been able to do many activities together, making countless memories. We don't know what's ahead, but for these weeks, we will be forever grateful. Of course we hope for many more, but we know and understand too well that time isn't promised. So, we choose to live today with gratitude and enjoy the blessing of another day with our son and brother!

I Peter 1:3,4
Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade-kept in heaven for you.

Thanks again for checking in with us and for your continual prayers on behalf of Joshua. You all mean so much to us and are special gifts from God.

For His Glory,
Janene

Thursday, May 6, 2004 9:10 AM CDT

Good Morning,

Just wanted to say hi this morning! Joshua is doing well and has been a joy like usual! His hearing test went well yesterday and the ENT feels like his hearing is about the same as it was before transplant. He has significant high frequency hearing loss, but hears well in the lower frequencies (ie normal conversation). That's pretty much what we expected since we haven't noticed any hearing deficits in day to day life. So...no hearing aid for now! A week from Monday, Joshua will have his medi-port placed. Next Wednesday, we go to the pediatric dentist who will be making recommendations about Joshua's teeth. That's about all the medical news from our end.

A few days back, Craig and I woke up early when a thunderstorm rolled in. As the thunder and lightning started, I listened for Joshua's cry. He hates loud noises and usually will cry in his bed and be terribly frightened. That morning was different though...I didn't hear any cries! Instead I heard little feet running quickly through the house. Without a cry, Joshua was soon in between us! He had run to the ones who would keep him safe.

I had to wonder that morning where I run to when the storms roll in. So many times I plant my feet and try to weather the storm on my own. I know I should run to my Father since He is almighty and sovereign, but am so surprised at how difficult it is for me to do that. I must learn to follow my son's example and run to Jesus! His example teaches me to not trust myself or my abilities, but to place my trust in the only one who is worthy to hold it. The benefits that Joshua found that morning were peace and rest. They are also available to me. I just need to run!

Running,
Janene

Monday, May 3, 2004 3:12 PM CDT

Hello Everyone,

Joshua continues to feel great! We had a good weekend and got some good swinging time despite the cool weather. Joshua's favorite thing to do these days is swinging on the swing set. It's good to see him outside running and playing like a normal kid.

This week the only medical thing scheduled is his hearing test on Wednesday. I will take him to Dr. Barnes in the morning and really hope he won't be needing hearing aides at this point. The dentist appointment will be next week which should be very interesting.

This afternoon I went into the living room and saw Joshua sitting on the back of the couch. That is a normal thing for a 5 year old that hasn't gone through cancer treatment. On the other hand, Joshua has never even tried to do that before that I can remember. He just looked at me and smiled and said "mommy, I'm doing a Joshua trick". I didn't have the heart to tell him to get down because of what that simple act signifies. It shows me that he is getting stronger and gaining motor skills he has never had before. It also shows me he is feeling more confident and more able to attempt new and exciting opportunities. Wow...sounds like normal life to me! I just said "be careful Joshua" and pray he has many more climbing and adventuresome opportunities in his life.

That's about all the mom ramblings I will do for today. As always...thanks for checking in with us and for your continual prayers and support for our son Joshua.

For His Glory,
Janene

Thursday, April 29, 2004 3:16 PM CDT

Hello Everyone,

Joshua continues to feel and be well. He is happy this afternoon cause Jonathan came over to play. They are now playing computer games and having fun.

This morning Joshua and Craig went to the dentist. As we suspected, Joshua's teeth have severe damage from the chemo and other treatments he has received. Dr. Speake said that he has many cavities along the gumline throughout his mouth. It sounds like about every tooth is affected. So, on the 12th, we will be seeing a pediatric specialist who will make recommendations about what to do for him.

Most of our friends with Neuroblastoma are going through similar situations. Many of them are doing a huge amount of work while under sedation at a hospital. It will likely involve everything from filling cavities to pulling teeth and even crowns or root canals. Sounds fun huh!

Joshua had fun at Dr. Speake's office today. He doesn't have a clue about what's coming. Thank goodness:)

Well I have no other medical news to tell you about. This morning, Craig and Joshua were actually wrestling on the living room floor. They have never gotten to do that before and it was one of the most beautiful things I have ever witnessed in my life.

They say that laughter helps the healing process! Judging from my son lately...he's really trying to get well in a hurry. I hope laughter and joy is prevalent throughout your life today!

With Joy,
Janene

Wednesday, April 28, 2004 11:54 AM CDT

Hello Everyone,

I hope today find you and your families well! We are doing about the same. Joshua continues to feel well. We had our first bike crash and finally got a bandaid for something non Neuroblastoma related.

Joshua is going to the dentist tomorrow morning with Craig. We're hoping his teeth will not be affected from the cancer treatment, but likely they will. He lost his 3rd tooth yesterday afternoon.

Joshua's hearing evaluation will be done in a couple weeks...before we head back to NYC. We'll get a new line on the 17th and other than that, we should be "just hanging out" as Joshua would say:)

This morning we heard the news that one of the few children who have reached remission again after relapse, has relapsed again. Please remember Bryan and his family as they start this horrific process for the 3rd time. It's a sobering reality to know and understand that surviving relapsed Neuroblastoma is not likely. Then when the few children we look to as examples of hope, relapse again...the thoughts run rampant.

So in the midst of so many questions, I choose to focus on the few things I know for sure...
1. God is sovereign and good! Oh how many times He has proven that to us over this past year.
2. I can't keep Joshua here on this earth one second longer than God has ordained.
3. My son is a gift from God and I must focus on that gift and be grateful instead of focussing on wishing I had the security of many years with him and becoming bitter.
4. Death isn't something to fear when you have a personal relationship with Jesus and will spend eternity in His presence. The more we understand eternity and heaven, the less "hold" fearing death has on us.
5. I've been given today as a gift. I must use it fully and truly appreciate all of the gifts God has given, because there is no promise of tomorrow.

I do wish each of you a blessed day as you live it to the fullest extent possible. I pray you bring honor to the Giver of Life in all you do.

For His Glory,
Janene

Monday, April 26, 2004 10:40 AM CDT

Good Morning and a Happy Monday to you:)

Joshua is doing well and sends his love to each of you. We had a good weekend and continue to be grateful for how well Joshua is feeling. He is eating, sleeping and playing and overall just enjoying life.

We aren't expecting any medical things AT ALL this week! Yahoo! We are and will be able to focus on our ministry at Washburn, church and family in the coming weeks. Craig and I call it our reprieve. We're grateful to God for allowing us this "reprieve" from cancer and all related fears and stresses.

Joshua's line placement will be May 17. We may get in a visit to the Ear Specialist and dentist in between now and then. I'm anxious to know what type of hearing loss Joshua is experiencing as many of our friends are in the process now of getting hearing aides after receiving the same treatment Joshua received.

That's about all for now!

Thanks for checking in with us and for your continued prayers on Joshua's behalf.

Love,
Janene

Thursday, April 22, 2004 10:08 PM CDT

Hello Everyone!

Just wanted to write a short update about our day:)

We had a good clinic appt. and saw Julie and Dr. Watanabe in KC this morning. Joshua's platelets were a whopping 173. His hemoglobin was a 11.6 and his white count was 4.4. I don't ever remember seeing his counts that high before. I am thankful that his body is rebounding and that he has quite a few more weeks to continue that journey before we're due back in NYC.

We will be putting in another line in Joshua's chest on May 17th. It will be done at Children's Mercy in radiology. We have until then to decide if it will be a hickman or a port. Joshua told Julie today that he wants a port. They showed him a doll and he actually stuck the needle with the port into the doll's chest. He seemed to be fine with it. It promises to be interesting.

After our appt. we went to Fritz's at Crown Center. That is Joshua's (almost favorite) place to eat. You order on a phone and trains bring your food to the table. Joshua would say "it rocks dude". Aunt Nette and Marsha and Sarah and Jonathan met us there and we had a nice lunch before coming home again.

Bethany stayed home from school today and has been a little under the weather. She has a cold and sore throat and has been a little nauseous and dizzy. She seemed better by the time I got home. We are hoping she'll feel much better in the morning.

That's about all the news I have from The Freerksen household for tonight! I hope you have a great Friday!

For His Glory,
Janene

Wednesday, April 21, 2004 4:57 PM CDT

Hello Everyone!

They said YES! We just got the phone call we've been waiting for. The Annuity Board is overturning their previous decision to deny Joshua's medical treatment in New York City. They will be paying all previous claims. I was speechless on the phone, but so incredibly thankful.

Many thanks to all of you who have been praying for God's will to be accomplished throughout this situation. We love you and appreciate each of you.

Lastly, we thank God for continuing to remind us He is walking beside us every step of this journey. Where would we be without His grace?

With Love and thankfulness,
Janene

PS Joshua is doing well. He is sleeping, eating and playing like a normal 5 year old. Tomorrow we go to KC for a visit with Dr. Watanabe. We will probably decide what to do about his central line.

Monday, April 19, 2004 8:53 PM CDT

Hello Everyone,

Joshua had a good weekend and especially enjoyed our trip to Worlds of Fun with the College students on Saturday. He ran from one ride to another and couldn't get enough. We managed to avoid sunburn, but came home totally wore out.

We will be going to KC to clinic on Thursday this week to discuss central line issues and a few other things. We are trying to figure out what would be best for Joshua.

Tomorrow NYC will be running Joshua's blood testing for HAMA. Oh how we wish that he would be HAMA positive. Then we would be totally done with antibodies and wouldn't have to worry about any line. That would be such a blessing.

We should hear from our insurance sometime after Wednesday. We think they've made their decision, but they won't be able to contact us until after they meet once more on Wednesday. Oh how we wish the answer would be "yes". It's more than just the money to me at this point. I want them to say yes because they value my son's life. It is personal for me because Joshua has this illness and his only chance of cure is by using experimental measures. There is no proven cure for Neuroblastoma and if they say "no", it will feel like they are saying we don't value his life.

If you can't tell, the mom emotions are sky high and the mom strength is down to nothing. I wish dealing with this disease got easier instead of harder.

So, to close tonight, I choose to focus on giving thanks.

I am so thankful for my husband Craig who is walking side by side throughout this battle to the death. He is my constant support and my living example of Jesus. I can't even fathom going through this battle without him.

I'm also thankful for my daughter Bethany. She was my first gift from God and has been such an incredible big sister to a brother who adores her. She is beautiful and wise beyond her years. She gives me so much purpose and for that I thank God.

I'm also thankful for my mom. She taught me so much as I watched her say goodbye to my dad here on earth as he was welcomed into Heaven. She taught me by her example that the only way to make it through the biggest trials in this life is by looking only to Jesus Christ for strength, peace and hope. She taught me that trying to handle things in my own strength is perhaps something to fear more than death itself.

I'm also thankful for my sisters. They have been my constant support for which I am eternally grateful. Nette from here and Kristi from Ecuador. They have both orchestrated strong prayer networks for Joshua and have been prayer warriors through thick and thin. Thanks for standing in this gap!

I am so grateful for Craig's parents and family. Grandpa John and Grandma Myrle have been Joshua's most faithful visitors and have always brought a smile to Joshua's face. Their love and commitment to their grandson is second to none and I am so grateful. Craig's family also has been full of support for all of us. The encouragement has been endless and we are so thankful for each one of them and what they mean to Joshua. Thanks John, MaryBeth, Dan, Troy, Karen, Lee, Jany and all of our nephews and nieces and niece to be.

I am also thankful for a very dear friend named Marsha. She has cried with me and cheered with me every step of this journey. She loves Joshua like he were her own son and Joshua would rather spend time with her and Russ and the kids than Chuck E Cheese. And that's saying a whole lot:) Most cancer moms say their friends disappear after the first few months. Because of Marsha, I can say the opposite and I can't even begin to tell you how grateful I am and how much strength I get from her friendship.

There's so many others I could thank...Ken and Lynda Gimple for being on our 1st Team of Prayer, Laurie Sidlinger for being our wonderful friend and home nurse hand picked by God himself, and countless others. The only thing I can say is God is good. The blessings He gives us are all of you. I am grateful and I appreciate the opportunity to remind myself how much He has given. Words aren't enough to express my gratitude so please listen to my heart!

With Love,
Janene

PS
Last but not least...I'm thankful for my gift #2 named Joshua Michael. He is and has taught me so very much as we have made this journey together. Joshua, I thank God for giving me the best son if the world. You are a rare treasure and one I will never take for granted. I love you son! Mommy

Friday, April 16, 2004 7:36 PM CDT

Hello Everyone!

Happy weekend to all of you:)

Joshua has had a good couple days. Yesterday I went with him to Children's Mercy for his EKG, Echo, and Pulmonary function test. Those went fairly quickly and we were home just in time to get everyone ready for Christian Challenge. He was happy and really liked the nurses in Pulmonary. They put a clip on his nose and had him blow real hard into a tube. The computer than read his lung function. Joshua thought it was great fun and wanted to wear the nose clip on the way home. He thought it made him look cool! Who was I to argue...

Today Joshua has been feeling great. Our friends Sarah and Jonathan have been here today playing and that always makes his day:) He has played outside and inside and everywhere in between. Grandpa and Grandma even stopped by to visit with bubble blowing guns that were a great hit.

Tomorrow we are all going to Worlds Of Fun in KC with our college students. Since Joshua is still on accutane, I have to keep him out of the sun, but we still want to go and have this day of fun with the students we are so blessed to work with. Before we know it, the year will be over. It has truly gone fast.

We did hear that Joshua's MRI was clean, but haven't heard about his bone scan yet. Thank you Jesus! We also will probably hear soon about his central line placement and whether or not our insurance will pay for Joshua's treatment. Hopefully though, we can spend all next week at home.

You all have a great weekend and know we love and appreciate each one of you. Thanks as always for your prayers and continual support on behalf of our son.

In Hope,
Janene

Wednesday, April 14, 2004 7:51 AM CDT

Good Morning!
Joshua is doing well this morning! The scans yesterday in KC went as well as could be expected. The IV was the tough part. All in all it went alright for an unpleasant needle stick. Then he was injected for the bone scan and they waited for 3 hours. Usually the waiting is tough, but at Children's Mercy, they like to give their Hem/Onc. kids space to wait in their conference room so they don't have to be around the general public in the waiting room and catch the bug of the day. That meant that Craig and Joshua got a nice conference room to themselves for the morning with a TV and Nick Jr. When they got there, the Rubberdubbers were just starting so Joshua was all of a sudden a happy guy.

When it was scan time, they decided to not sedate him. He did fine for the bone scan like usual and then they moved to the MRI. They gave him a special set of goggles to wear that allowed him to watch a DVD. That was nice and helped him not mind the enclosed and very loud MRI machine. He did very well during the MRI, but did end up getting a little medicine a couple of times when he was moving. Thanks to no sedation, they were on their way home quickly and were home by 3:00 PM. I asked Joshua about his day and he reported that "he had fun at the hospital".

Today we get to stay home and tomorrow it's back to KC for an echo, EKG, and a Pulmonary function test. I will be taking Joshua since Craig spends Thursday getting prepared for Christian Challenge. I am hoping to go early and take Joshua to Fritz's at Crown Center. That is his favorite restaraunt and has trains that run overhead that bring your food to you. He just loves it there.

Well that's about all I know for now. God is good and despite the uncertainties of the future, I am thankful for these days and weeks at home with my son. Whenever I start wondering or worrying about the future and whether Joshua will be OK, I am reminded that we have today! So, I better run and make the most of it. I hope you do too!

In Hope,
Janene

Tuesday, April 13, 2004 8:14 AM CDT

Hi!

Craig and Joshua left early this morning for KC. The tests and scans should be done by 2:00 PM. Please pray for Joshua's strength and grace on this difficult day! He left this morning very happy as usual. He is such a blessing to me each day! As usual, we'll be thankful when today is complete.

Thanks so much for everything!

For His Glory,
Janene

Monday, April 12, 2004 8:03 AM CDT

**Special Update**
I just received a call from the Southern Baptist Annuity Board in regards to our final insurance appeal for Joshua's antibody treatments in NYC. She indicated that they had met last Thursday for a long time and were unable to reach a decision. They are requesting additional information and will be meeting again on April 21st. So, we still have a possibility and ask you to continue to pray that God's will might be accomplished throughout our lives! Thanks so much.

Good Morning!

We had a great weekend and hope your Easter was wonderful. Joshua continues to feel well and is so much fun to be around these days. He has been playing legos and his clifford computer game as much as possible these days. He makes the legos into animals and pretends with them. He can get quite a story going in his mind.

Tomorrow Joshua and Craig are going to Children's Mercy for blood work, MRI scan, and a bone scan. These are extra scans our home hospital wants to do that NYC doesn't require. Joshua's main doctor really wants us to do them even though we would rather not for many reasons. So, they will be leaving here about 6:00 AM and Joshua will have to have an IV and be NPO until afternoon. He hasn't been stuck for an IV while awake since last Summer. It will be interesting.

Please pray for strength and peace for Joshua tomorrow. It will be a tough day for a little kid, but one he has had much practice at. Then, we will once again be waiting for scan results. We will also be planning surgery to put in a medi-port before June 1 when we are scheduled back to NYC.

That's about it for now. As always, thanks for checking in with us and for your continual prayers.

Love,
Janene

Saturday, April 10, 2004 8:43 AM CDT

Good Morning,

Joshua is doing well today. He is happy and playing and fever free. He is eating like crazy and enjoying life. What a great way to celebrate Easter! Last Easter we were in the hospital for Joshua's first infection after chemo #1. What a year it has been.

I've been thinking a lot about Easter the past few days and the signifigance it has for our family. God sent his Son to die on the cross for our sins and take our punishment so that we could spend eternity with him. Simply, by that act in human history, death was defeated. Death no longer has any power for those who know Jesus Christ and will spend eternity with Him. That use to mean a lot to me. Now it means everything! Death is defeated because of what Jesus did that very first Easter. I can face the uncertainties of my 5 year old and Neuroblastoma because death holds no power in light of eternity. What a reason to celebrate our risen Lord!

Because of Easter, hope is born. Hope for Joshua and hope for you. I pray you know that hope fully this Easter and that you will join us in celebrating all He did for us because of His incredible love!

Because of Easter,
Janene

Wednesday, April 7, 2004 8:21 AM CDT

Good Morning from Home:)

Joshua continues to do well and he is so very happy to be home. He was just about up and dancing in the aisle of the airplane as we neared Kansas City. I've never seen him so excited to go anywhere. He and Bethany ran into each other's arms and it was truly a beautiful sight.

As promised, we also went to Chuck E Cheese last night. Russ and Marsha and Sarah and Jonathan came a long and Joshua had so much fun. His eyes sparkle all the time, but they do something beyond sparkle at that place. We were last there 6 months ago for his 5th birthday party. He was bald with tubes out of his chest and awaiting a month long hospital stay for his stem cell transplant. Last night, he looked like a normal child. The only thing that was the same was his big smile. That doesn't ever seem to change.

Now we have 8 weeks at home before we go back to NYC. I don't think he developed HAMA if his pain is any indication of that fact. We will now move to 8 weeks at home and 2 weeks in NYC until he does develop HAMA. We hope and pray he does soon, but will leave that up to God.

We will likely have surgery sometime during the next 8 weeks to put in a medi-port. That is a central line placed under the skin that can be accessed easily during our treatments in NYC. We could try and do the treatments through IV's, but think Joshua would do better with the port. That will mean scheduling a surgery at Children's Mercy sometime soon. I'll update you more about that when we know more.

Otherwise, we are free and clear. We have a lot of days to enjoy and memories to make. I'm continually reminded that tomorrow isn't promised but that today has been given. God blessed us with "Today" and we need to enjoy it, and use it purposefully for His glory. That, I guess is my prayer for the next 8 weeks.

Joshua sends hugs your way and the rest of us send many many thanks for the prayers and support you continually give as we walk this road.

For His Glory!
Love,
Janene

Tuesday, April 6, 2004 12:37 AM CDT

Hello All,

We just got home! I changed our tickets yet one more time since Joshua didn't get his line removed until later afternoon yesterday. All went well, and we took the early morning flight from NYC.

We are tired and I'll update more later. For now...we're mighty glad to be home. Joshua was so very excited!

Love,
Janene

Sunday, April 4, 2004 11:13 AM CDT

Good Morning,

Joshua is doing well today. We have been hanging out in the room and he has been playing his Thomas The Train computer game all morning. I have been cleaning and packing and doing laundry.

Tomorrow, Joshua will be a hungry boy. He can't eat until after his surgery, but can have clear liquids a little in the morning. I have been talking with him a lot about the procedure and he is doing better than I thought. He is very nervous and scared about it which will increase greatly tomorrow.

Please pray that the procedure will be able to happen in a timely manner so he doesn't have the agony of waiting endlessly. Dr. Laquaglia will be doing the surgery for which we are grateful. Finally, please pray for peace and strength for both of us. I am very anxious for it to be over.

That's about all for now. Joshua and I will venture out this afternoon a bit. NYC actually has sunshine today. We haven't seen the sun a whole lot during these last few weeks. Thanks again for checking in with us and for your constant support. We love you all and thank God for you.

With Love & Gratitude,
Janene

PS
Please pray for our friends Joshua and Bryce and their families who will be having some difficult days this coming week. Scans and results will provide much anxiety as we hope and pray they have not relapsed with Neuroblastoma. Both of them are doing the same treatment in NYC as our Joshua. It has been a joy to get to know their families and I would greatly appreciate if my Joshua's prayer warriors would lift these 2 friends up to the Author of Life & The Prince of Peace! Many Thanks!

Saturday, April 3, 2004 4:12 PM CST

Hello Everyone,

Joshua is doing well today! We have been taking it easy today, but did manage a quick trip to Times Square. We've always gone by Subway before and this time went by bus. Joshua really enjoyed that and loves the technology of Times Square.

I left the stroller in the room and went on foot for the first time ever. He did OK, but I did end up carrying him some. I think we may venture out once more to get a few things, but will not do a whole lot tonight or tomorrow. I had hoped to go to the zoo, but it's a bit chilly. Maybe tomorrow will be a little warmer.

Joshua seems to be doing OK with his line removal scheduled for Monday. He doesn't like it, but he is asking a lot of questions and said for the first time today that he wants to go swimming. I said "You bet!"

Thanks for your continual prayers and support on behalf of Joshua during these last few weeks. It means so much to us.

For His Glory,
Janene

Friday, April 2, 2004 9:25 AM CST

Good Morning,

Joshua is feeling good today. He had the easiest round of antibodies he has ever had yesterday and had a good evening. We have 1 more day left of these treatments which we will soon be starting.

We will be staying through the weekend to have Joshua's line removed Monday afternoon. I'm not sure if we will come home Monday or Tuesday. Thanks for your prayers and support during these last few weeks. We're seeing a light at the end of the tunnel and are very anxious to make our way to it.

Love from NYC,
Janene

PS
We are now done with our last round of antibodies and it was a rough one. I couldn't get any nurse to come with pain meds for what seemed like an eternity. By that time Joshua was screaming like he was dying because the pain was so intense. In the midst of that time, I started crying for so many reasons. Mostly though because it hurts me so very badly to see him go through the torture he has to endure.

Joshua looked up at me in between his screams and noticed I was crying. (I get in the bed with him and put a pillow on my lap and he lays on the pillow while I hold his oxygen up to his face) He immediately was more concerned about me than himself and his own pain and pleaded with me to stop crying and be happy. I did and he said "mommy smile" as a direct command. When I smiled he looked up at me and said "mommy, that's a great smile"! Then he went back to his own pain and trying to deal with the incredible pain of monoclonal antibodies.

Once again my 5 year old has taught me what it means to really love others. It means putting our own desires and our own pain and our own difficulties on the back burner while loving others enough to feel their pain more than our own. It means unselfishness in it's purest form, and it means loving like Jesus loved.

Thanks Joshua for being my constant teacher and incredible example. You are my hero and I love you forever!

Thursday, April 1, 2004 9:33 AM CST

Good Morning,

Joshua continues to do about the same. His antibody treatment yesterday had less pain and we were able to cut the dilaudid doses to 2. He was in more pain when we got home and so I gave him another dose at that point. He was out of it all evening and woke up at night in pain and nauseous. So, we threw up and took a bunch of pills and then slept the rest of the night.

We have 2 days left of antibodies and are almost ready to begin today's treatment. I am really hoping for good days. If we could develop HAMA at this point, it would be wonderful!

At this point, it looks like we will be staying over the weekend and having his central line removed Monday. I think everyone feels better about getting it out now since his fevers are continuing. His antibiotics should be done, so we could probably come home with no tubes! That would be interesting. Joshua, on the other hand, will be very upset about the news. I will tell him over the weekend and it will be very tramatic cause they are a part of him now. In some ways, it would be like us losing a hand or foot. He thinks the line is a part of his body and that he will always have it.

I'll write more later when I know more. Thanks for your prayers and continued support on behalf of our son. It means a great deal to us.

Love,
Janene

Wednesday, March 31, 2004 8:33 AM CST

Good Morning,

Joshua is doing OK this morning. He ran a temperature again last night which barely stayed under the magic number when you call the hospital. This morning it had dropped a little bit, but was still there. I figure it is either from the infection or a side effect of the antibody treatment. I'd say that we have a good chance of going back to the hospital with how things are going.

Thanks for your prayers on Joshua's behalf. We really want to get home and be done with all this.

Love,
Janene

Tuesday, March 30, 2004 10:20 AM CST

Good Morning,

We did get released from the hospital last night and made it back to the Ronald McDonald House. Home health came and we are doing IV vancomycin every 8 hours.

Joshua seems to be feeling fine. He slept pretty good and only woke up uncomfortable once. I was up numerous times hooking him up and unhooking him for his vancomycin.

We are glad to be out of the hospital and are on the countdown to Friday. Thanks for your prayers and your continual support.

Many of you have asked about insurance. We still haven't heard, but greatly appreciate your prayers about that as well.

Much Love & Gratitude from NYC,
Janene

Monday, March 29, 2004 10:05 AM CST

Good Morning,

Joshua is doing well today after having a bit of a rough night. He had either nausea or cramping from diarrea that kept him up some. I am really hoping it is passing because he has been eating and very happy this morning.

They have told us that they will release us from inpatient today after Joshua's antibodies as long as they can coordinate home health to bring vancomycin and all the needed equipment to The RMH for us. We are presently hooked up to the GMCSF and hopefully will be starting antibodies around 1:30 PM. That should put us back to the RMC around supper if we're lucky.

My sister left this morning and is presently in the air flying back to Kansas. It was so nice to have her here while we were in the hospital. We had hoped to see some of NYC with her, but guess that will have to wait for a later time.

That's about all I know for now. Once we get back to the RMH, it's harder to update so you can assume that no news is good news in regards to our release.

Thanks so much for your prayers and support during this time. I am thankful that Joshua is doing well and I'm thankful to each of you for all you mean to our family.

In Hope,
Janene

"What you have in your Shepherd is greater than what you don't have in life"
-Max Lucado

Sunday, March 28, 2004 6:52 AM CST

Good Morning,

Joshua is feeling about the same this morning. He slept pretty well, although he did get up twice to throw up at night after not doing it all day yesterday. His diarrea is pretty bad, but at least he is content and not in noticable pain and discomfort.

We haven't seen the doctors yet today and will be asking about his cultures this morning, and his CT Scan results. I'll write more when I know someting. Thanks for your prayers and continual support.

In Hope,
Janene

5:30 PM
Joshua has had a pretty good day, despite the Jayhawks losing:( We won't have the CT Scan results until tomorrow or Tuesday. The cultures are negative which is good. If they stay negative and if Joshua avoids additional fevers and throwing up, we may be able to be released to The Ronald McDonald House tomorrow. Then we would continue the antibody treatments outpatient if all goes well. Thanks for your prayers. I'll update tomorrow with hopefully good news.

We did have a surprise today which was very nice. Jason and Lori Crawford from Topeka showed up at the room. They were on vacation and heard we were inpatient so they stopped by to say hi. I saw them and had to look twice because I wasn't expecting to see someone I knew. They made our day:)

Saturday, March 27, 2004 7:58 AM CST

Good Morning,

Yesterday was one of the worst Joshua has had for a long, long time. It reminded me of his bad days during transplant. He threw up anything and everything, had diarrea, had between 102 and 103 temp. with tylenol and was horribly miserable.

We tried every medication we could, but he still just lay in his bed and cried because he felt so nasty. Last night, he would go to sleep for a few minutes and wake up crying. He couldn't throw up anymore and so he just lay here in misery.

Finally after our 6th dose of dilaudid for the day and kytril, vistaril and ativan, he fell asleep at 2:00 am and slept pretty good til now. Now he is crying for food, but seems to feel OK stomach wise.

I am tired and yesterday was horribly draining for me. We had the CT Scans in the midst of everything. I'll write more about that later. I am hoping to hear things look fine, but don't know when I will see a doctor who can tell me the results.

That's about all from NYC,
Janene

9:00 PM
Joshua has had a much better day today. He has not thrown up, but is still dealing with a little diarrea and fever. I am so thankful that he has been happy and not feeling like yesterday. I am hoping this means that things are looking up.

Friday, March 26, 2004 6:39 AM CST

Good Morning,

Joshua is doing about the same, but has now been throwing up. I'm not sure what that means, but assume his infection is not clearing up. He did not spike a fever last night, but he just didn't look right to me. We gave him tylenol about the time he would of spiked, so your guess is as good as mine. He has significant feet pain last evening, which is a side effect from the antibodies.
So, all in all, he isn't feeling as good as he has, and I don't know what that means.

I'll write more when I know more. Thanks for your prayers on his behalf. We sure wanted to be out of the hospital by Monday when my sister returns to Kansas.

Janene

11:00
Joshua is vomitting more, but will still be trying to get the CT Scan done here in about 40 minutes or so. They don't think the vomitting is from the infection so who knows at this point. We should hear soon if the vanco levels are correct. Perhaps then we might get some clean cultures. My personal opinion is that we're going to have to pull the line in order to get clean cultures. That would probably happen soon.

Thursday, March 25, 2004 8:21 AM CST

Good Morning,

Joshua spiked a fever last night so it doesn't look like we're going anywhere other than here soon. His vancomycin trouphs came back low which means they needed to increase his dose. So they did that, and we'll wait and hope he doesn't spike anymore.

They also have finally identified the bacteria. It is responsive to vancomycin so they will continue with the current plan and hope it responds to the new levels.

We have already started the GMCSF for the day and will begin antibodies around noon. That will be good to help Joshua get back on some type of schedule since he is out of it and sleeping so long after all the dilaudid.

That's about all the news from NYC. The word from the slopes in Colorado is that Bethany loves skiing and thinks she's ready for the blacks. Craig and Bethany and the students who stayed to ski after the conference were at Monarch yesterday and are going to Copper Mountain today. Bethany and Craig will be skiing together today and may have just found a new Spring Break pastime.

I'll write more when I know more. That's all for now. Thanks for your prayers and support. I can't wait til April 2.

In Hope,
Janene

4:00 PM
Well, we're done with day 4. Joshua made it through the antibodies OK. His pain was very late and a bit weird. Lengthy, but somewhat less intense I guess is how I would describe it.

The Vancomycin levels are still low, so they are upping them again at 6:00 PM. I'm so glad they don't do troughs through peripheral sticks like they did at KU Med Center. That would be a bit of a mess.

That's all for now. Hope everyone is having a great Spring break!

Wednesday, March 24, 2004 7:53 AM CST

Good Morning!

I hope this morning finds you doing well. Joshua is inpatient this morning, but feeling better than he has been in probably a week. Whatever the bacterial infection is, it doesn't like vancomycin and our Joshua is back in full force.

He was up bright and early at 6:00 AM...that would be 5:00 AM home time. This after going to bed between 11 & 12. He is as happy as a lark and is making friends with each and every person who enters the doors. He seems to love to make people smile early in the morning especially.

So now we're just waiting. They will probably treat with the vancomycin for 10 days following negative cultures. I think they will release us back to the Ronald at some point on IV antibiotics, but I have no clue when. Hopefully we'll find out some specifics soon.

Cat, Joshua's 3F8 nurse will come up to our room to do antibodies today. We ought to be starting the GMCSF infusion soon and perhaps the 3F8 around noon if we're lucky. We're in a double room with a 3 year old that has a brain tumor. I feel bad because when Joshua gets antibodies, it hurts and it hurts badly. Everyone in the room knows it and everyone in the hallways knows it. I suppose everyone on the floor will know it. It's better in the clinic because everyone is there and understands the pain of antibodies.

So, that's about it for now. We're doing fine and I'm hoping to be able to be released sooner than later...whatever that means. Thanks for your continued prayers on Joshua's behalf.

In Hope,
Janene

4:30 PM
Well, we made it through another day of antibodies. 4 doses of dilaudid and lengthy pain. Overall, I think it is more like round 2 instead of 3. He is still sleeping and is on the oxygen monitor because he kept saying his throat was feeling very yucky. Swelling in the throat is one thing they watch closely here during the antibody treatments. He seems to be fine though.

We're still waiting on word from the doctors. They told my sister this morning that we'd be going back to The Ronald with a pump. This ought to be fun. For those of you who have done IV antibiotics at home, you know that that's about all you do. We'll go gladly though. I'm just really ready to be done and come home. I'm tired and it's only day 3:(

Tuesday, March 23, 2004 12:06 AM CST

Hello Everyone,

Well it's been quite a trip already. Yesterday, we were in clinic from 8:15 AM - 6:00 PM. It was endless. We go GMCSF by IV and finally started antibodies at 3:00 PM. The pain was very long, but somewhat less intense then last round. He required 4 doses of dilaudid like usual and was groggy until 9 or 10 PM.

Now for today...

Joshua's blood cultures grew a gram positive bacteria that is yet to be identified. That means we will be admitted inpatient until the cultures are negative and will likely have surgery to remove his central line. I am hoping that he will be allowed to finish antibodies with the line and that we might remove it in KC, but that is yet to be determined.

This morning, as soon as they got the call that his cultures were positive, he started chilling and mottling and all of a sudden we were swarmed. I guess he was headed down the "sepsis" road and they were very concerned. It's amazing how quickly doctors appear when they are truly needed. He quickly responded to their treatment and is now doing well and receiving his first dose of vacomycin. I am so thankful that we were here this morning when that all started happend. I've heard of so many children in cancer treatment who have gone into septic shock and have almost died. We are in the right place to deal with this and for that I am filled with gratitude.

So, I will update later when I know what's going on. Thanks for your prayers on our behalf.

Thankfully,
Janene

Sunday, March 21, 2004 11:51 AM CST

Hello Everyone,

Joshua and I are getting ready to leave a little later this afternoon. Craig's parents are taking us to the airport instead of watching the KU Jayhawks advance into the sweet 16. Thanks Dad & Mom!

Joshua woke up this morning with a pretty severe headache again. It took the whole morning and 2 tylenols and he is now feeling pretty much OK. I am anxious to hear what Dr. Kushner says about these headaches.

Last night, I was trying to change Joshua's central line dressing and flush his line in preparation for leaving today. One side worked OK, but the other one did not. After much work, 2 pliars, 2 phone calls to Laurie (our wonderful home nurse & friend) and a lot of praying, we finally got blood return. That was such a relief because if we would lose Joshua's line now, we would of had to use IV's for the next 2 weeks. That would have been a lot of needles. Thank you Jesus!

I have a lot of feelings about the next 2 weeks, and most of them are not good. It is so incredibly difficult for me to do this. I really wish I liked to travel, I wish it didn't bother me to be away from Craig and Bethany for 2 weeks, I wish my Joshua wouldn't be in such awful pain, I wish I didn't have to worry about headaches being from brain tumors, and I wish I knew that all of this would help in the long run in saving Joshua's life.

But that is not the life we have been given. So, we cling to the Keeper of the Life with all of our might, because we know that He walks beside us each step of the way and has the strength when I don't.

__________________________________________________

Psalm 146:5,6
Blessed is he whose help is the God of Jacob, whose hope is in the Lord his God, the Maker of heaven and earth, the sea, and everything in them-the Lord, who remains faithful forever.

Psalm 147:10,11
His pleasure is not in the strength of the horse, nor his delight in the legs of a man; the Lord delights in those who fear him, who put their hope in his unfailing love.

___________________________________________________

We hope and pray that you know that strength and hope in your lives through a personal relationship with the God who created you. Have a blessed day walking with Him.

For His Glory,
Janene

Saturday, March 20, 2004 5:38 AM CST

Good Morning

It's way too early this Saturday morning! We got up at 4:30 and Craig and Bethany walked out the door just a few minutes ago. Of course, my early rising Joshua heard all the comotion and came out to say goodbye. Then he figured it was morning so we probably ought to start the day:) How can a mom say no to that.

Bethany is excited about their trip, although she was very sad to say goodbye to Joshua. She is a great big sister and feels so much responsibility for him...most of the time:) I can't wait to hear how she does in ski school. Most of tomorrow will be spent skiing with the conference in the evening. Thanks for praying with us for the students that are attending. God is going to do some incredible things this week.

Joshua woke up happy and seems to be feeling OK. His headache came back a little bit last night, but didn't seem to bother him a whole lot. We will spend the day getting ourselves packed I suppose. This is waaaayyyy too much for this home loving mom:) Who knows, maybe I'll love traveling after all this practice.

Thanks for praying for Joshua, and the rest of our family during these next few weeks. We've never been separated for this long before. Cancer seems to love to destroy families, but when it came into our family, it met it's match. The opposite has happened. Our bonds are stronger and our commitment to each other is unwavering. The fire that burns so many is making us stronger. That is a God thing! We are grateful to Him for giving us the strength to lean on each other with the commitment and trust that He desired when he created family. We pray the same for you!

For His Glory,
Janene

Friday, March 19, 2004 5:09 PM CST

Hello Again,

After lunch today, Joshua has returned to more of his normal self. I am hoping he had a bug and that he will be feeling fine here on out. He hasn't had a headache since this morning Yea!!!!!!!!!!!!!!!!!!

I am packing and trying to get stuff in order for being in Colorado and New York. Since I am a major home body, that is usually quite a monumentous task. I can't wait til I can stay home again as long as I want. I don't think I'll ever want to get on an airplane again after we're finally done with Joshua's treatments.

After this round of treatments, we are hoping that Joshua will obtain HAMA. That will mean he is done with antibodies and that he can have his central line out. Wouldn't that be awesome if he could go swimming this Summer and be ready to start Kindergarten with no extra tubes anywhere. But, that we will leave up to God himself.

Thanks so much for your prayers on Joshua's behalf. We are filled with gratitude for all you do.

In Hope,
Janene

Friday, March 19, 2004 6:55 AM CST

Good Morning!

Joshua slept all night and woke up this morning with his headache! I'll be talking to NYC tody and asking for their perspective since we start treatment Monday. Thanks for your prayers!

In Hope,
Janene

Thursday, March 18, 2004 8:55 PM CST

Hello everyone,

What a day it has been! Joshua woke up about 1:00 AM this morning with a low grade fever and a very bad headache! It was very strange, because even through a year of cancer, headaches have not been part of this road.

Like most cancer moms, I immediately thought "here comes the brain tumor relapse". No matter how hard I try, I can't seem to shake this fear of relapse when Joshua has a questionable symptom. So anyways, I dealt with that fear all morning and finally did hear a probable answer from one of our pharmacists and our nurse practitioner in KC. They both feel Joshua is reacting to the GMCSF shot we started in preparation for NYC. Joshua felt lousy all day, and I really hope that is all it is. I'm not sure how we're suppose to do 17 days of treatment if he feels like that all the way through, but I guess we'll find out soon.

So, it has been a long day for me. I'm trying to get physically and emotionally ready to send Craig and Bethany off and get Joshua and I on a plane for NYC and with this added strain, I am left rather speechless. I am very anxious for April 2. I wish I was on the plane coming home right about now. More than anything though, I wish that Joshua would wake up tomorrow morning feeling fine. Headaches are scarry when you live in the world of NB.

That's about it for now. I would just ask you to lift up Joshua and the rest of us during the next days as you remember. This is going to be a tough one for us. We appreciate and value your prayer support in so many ways.

With Love and Hope,
Janene

Wednesday, March 17, 2004 11:59 PM CST

Hello Everyone,

It is now early Thursday morning. I find myself still awake because I just got word of another child's death. Cierra was a beautiful 8 year old girl with Neuroblastoma. I have followed her story for many months and am so sad. Please pray for her mom. I can't even fathom what she is going through tonight, but my heart aches for her.

Sometimes we escape the reality of Neuroblastoma for a little while, but then it comes back with a roar. I never knew that this type of pain existed. I knew cancer and that cancer was bad, but I never could have dreamed that "this reality" was out there. The reality is simply this: Neuroblastoma kills many, many children with a torturous, painful death. It is a dark reality...but it is ours.

I long to find my purpose in the midst of this darkness and pain. Joshua's cancer will not be in vain. I just won't let it. I must find eternal purpose that will bring light to a darkness that is beyond my comprehension. My fear is that to do that, I will need to experience that darkness. But my hope is that Joshua, Bethany, myself and Craig can together find this purpose and as a team fulfill it for His glory.

Oh that God will find us faithful!
Janene

------------------------------------------------

Find Us Faithful

"Oh may all who come behind us find us faithful
May the fire of our devotion light their way
May the footprints that we leave
Lead them to believe
And the lives we live inspire them to obey
Oh may all who come behind us find us faithful"

-Steve Green

Tuesday, March 16, 2004 8:34 AM CST

Good Morning!

Just wanted to write this morning and say things are going well. Joshua and Bethany both had colds late last week and into the weekend, but they are suddenly gone! They just disappeared...one more sweet mercy from God in our long list of them:)

Joshua is feeling well and is happier than any person I know! He continues to live minute by minute in gratitude. Last night he was sitting on my lap finishing his dinner and he said "mommy, you are the best mommy in the whole wide world". I said "thank you Joshua" and he replied "Ah mom, it was nothing!"

He seems to be fine with going to NYC on Sunday for which I am grateful. The new pediatric clinic is newly opened at Sloan and we will see it firsthand. It's supposed to be incredibly nice, but I'm quite sure Joshua will say he wants to go back to his old bed in the old clinic to get his antibodies. I will probably take him up to the old floor first and show him that everyone is gone cause it will be very strange for him to go to a new place.

Craig and Bethany are leaving Saturday for Colorado. They, along with a group of our college students will be going to Frontier Ranch in Colorado. It is a Young Life Conference Center where we will be joining students from KSU and having our annual Summit Conference. Gordon McDonald will be the speaker and those of you who have read his books will understand that this will be a significant week for all who attend. Please join with us in praying that God would do a significant work in the hearts and lives of each of the students attending.

That's about it for now. Thanks so much for checking in with us. Please also pray for our friend Bryce. He is a 3 year old who is getting ready to start round 6 of antibodies in NYC. He has been having significant leg pain which is a common sign of relapse. His parents are understandably worried. We spent a week with them 2 rounds ago and enjoyed getting to know them. Bryce is a sweet kid who loves superheroes just like my Joshua. Thanks for praying for them!

In Hope,
Janene

Sunday, March 14, 2004 4:47 PM CST

Hello Everyone,

Today is a significant day in our home and I wanted to share it with you. A year ago today, we were admitted to the hospital in Kansas City after a hard week and much pain. It was this day last year that we heard the news for the first time that our son Joshua had cancer... probably lymphoma. We were in the hospital a full week before we heard that our reality was stage 4 Neuroblastoma, but our lives were forever changed by the events of March 14th, 2003. It was that day that this journey began. At this year mile marker, I find myself thoughtful and reflective and so grateful for so many things that have transpired for Joshua and our family as we have walked the road of Neuroblastoma.

I have been busy counting my blessings as I have relived this past year over and over in my mind. I am so grateful for the blessings God has orchestrated throughout our journey and feel His fingerprints throughout this past year. He has been faithful to us and for that I am so incredibly grateful.

I am also grateful for all of you. Many of you have supported and encouraged our family constantly during this past year. You have prayed and prayed and prayed. For that and so much more we say thanks. God has supported and loved us through each of you and we are so grateful.

With love and gratitude,
Janene

PS We had a celebrate 1 year party today. Joshua cut the cake and had a blast. Today has been yet another blessing in this journey.

Saturday, March 13, 2004 9:19 AM CST

Good Morning Everyone,

I hope you all are having a great weekend. We are sneezing and going through a bunch of kleenex, but are doing alright. Joshua is happy and playing, and everytime someone sneezes, he says "oh no, I think you have a bad cold too"!

We went to the mall last night and ate at Chick-fil-a. That is Joshua's favorite and I think he would never stop eating if we didn't say "that's enough". We stopped him at 14 nuggets, and he was very sad. He just never eats that much and we didn't want him to get sick.

We sent his blood to NYC yesterday and will hear soon if he did develop HAMA. Otherwise, we will begin shots on Wednesday and fly to NYC on Sunday evening. I got some great airline tickets that will allow us to have non-stop flights both ways. We will leave Sunday night and come back Friday, April 2.

Joshua taught me another lesson the other day that I want to share with you all. He has such a soft heart for other people and can't stand to see them hurt. From early on, if Bethany cried, Joshua would cry because it made him so sad to see his sister sad. I've noticed that his sensitivity is only increasing lately. I try desperately to not let him see me sad, because his little heart just breaks into pieces. During the last round of antibodies, I could hardly handle having to start the shots up again. I lost it and started crying and he just crumbled. Even if I'm reading something and have tears, he can hardly bear it. He usually just bursts into tears himself and says "mommy, don't cry...please be happy". Then he will try and do something to make me feel better. So anyways, mommy tries very hard to not get over emotional because of how difficult it is for Joshua to handle. Yesterday it dawned on me. Joshua is doing what I should be doing. It should break my heart to watch people in pain. I should be filled with sadness if others are struggling so that the only thing I can do is sit down and cry with them. Joshua loves so purely and I need to do the same. If I love people with that kind of love, I won't be able to continue on with my life when they are in pain. My love will compell me to sit and cry with them and help them dry their tears. That perhaps is what real love is all about.

In Hope,
Janene

Thursday, March 11, 2004 10:13 PM CST

Hello Everyone,

Well, today has been good! Joshua is doing OK, although he seems to be developing a cold with a nasty runny nose. He also is having more trouble with the accutane. He has 3 more days in this round and then we will be off for 3 weeks again. Joshua's face is peeling and has a rash from the accutane. When I try to put something on it, he screams because it burns. Regular chapstick is the only thing he doesn't mind. His lips are dry, but not bleeding yet. I'm globbing on chapstick, hoping to avoid that part.

Today, Joshua wanted to play outside all day. He wants to play ball with daddy. Mommy playing ball doesn't cut it anymore. Craig is so good with him and they had a "ball" playing "ball" today.

Tomorrow, I will be sending a blood sample to NYC to check if Joshua is HAMA positive or negative. We don't expect him to be HAMA positive due to the level of pain he experiences.

One of the really great things about my son is that he always sees the good in people. He loves to compliment people and enjoys the responses he gets. The other day he told us "Daddy, you are a good driver...Mommy, you are a good maker (that means I make good food)...and Bethany, you are a good Barbie player"! I told him thank you for the compliment and asked what he was good at. He thought for a minute and finally said "I'm a good ball player". Daddy smiled and mommy hoped. Thanks Joshua for teaching us how to see the good in people.

That's about it for tonight! Thanks so much for checking in with us and for continued prayers on behalf of our son. You all are the best!

With love & gratitude,
Janene

Psalm 18:2
The Lord is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust.

Wednesday, March 10, 2004 10:23 AM CST

Good Morning,

Joshua is doing well today. We had a tough day yesterday, after reading the results of Joshua's latest MIBG scan. The scan report left Craig and I with many questions. It mentioned 3 areas of concern with uptake they could not rule out as NB. The wording in the report really scared us and we both began facing the reality of relapse and all that means for our family.

I emailed our doctor in NYC and asked for clarification and then we waited. He responded back last night and was able to put our minds at ease. The reason why Joshua had uptake in his poterior abdominal region was because he no longer has his left adrenal gland. So, the right adrenal gland has to compensate and grows larger to do so. Because of this, the right adrenal gland absorbs more MIGB compound which is the substance that lights up on the scans. So, in summary, Joshua had 3 areas of uptake that were not totally normal! But, the doctors feel like each area is fine and is showing uptake for other reasons than Neuroblastoma. I hope that all makes sense.

So, we have today to enjoy and live out purposefully for the glory of God. When I face the possibility and probability of watching my son enter eternity, I am reminded more than ever before that each day is a gift. One in which we should love fiercely and work tirelessly to bring the Keeper of this Life the glory He deserves through our obedience!

I pray that today finds you in a personal, life changing relationship with the only God of the Universe! He is the one who holds our future, and He will hold our hand as we walk that road.

For His Glory,
Janene

PS Joshua came and crawled into bed with us early this morning along with his sister. He just smiled at me and said "mommy, we are a family". Truer words could not have been spoken this morning. I thank God for my family and for the challenges of this past year. We have never before been so separated by miles, hospitals and cancer treatments, but those challenges have bonded our hearts together in such a way that even Neuroblastoma will never, ever be able to penetrate.

Tuesday, March 9, 2004 8:07 AM CST

Good Morning,

Joshua continues to feel good! He is happy, running, jumping and loving to be outside. He looks way to normal for everything he has endured during this past year. We are in week 2 of the 2nd round of accutane presently. He is starting to get dry lips and skin on his face, but it looks like it will be about like round 1 was...relatively painless. I haven't noticed any mood swings and am thankful for that since accutane does have quite a reputation for making kids into monsters:)

Friday this week, we will be drawing blood and sending it to NYC to check if Joshua is HAMA positive or negative. I'm reasonably sure he is still HAMA negative due to the large amounts of pain he had last round.

When we go for round 4 in a week and a half, we will change and start watching for HAMA. After round 4, they want him to develop the HAMA which means his own immune system is recognizing the antibody as foreign and will fight it. They feel like at that point, Joshua's immune system may be trained to fight NB on it's own. So...the best case scenario is that he would be HAMA positive after the 4th round. In that case, we would be done with treatment in NYC and finish out the accutane and be off treatment. If he doesn't develop HAMA, he will continue going to NYC until he does or until 2 years have gone by.

I am hoping for an early HAMA, but will leave that up to God. The one who holds Joshua's life and his hand as he walks this road is faithful!

That's about all the Joshua news I have for today. Bethany had her school pictures taken yesterday and also seems to be developing a love for Basketball. Craig and I have been letting her walk up to the BB court a few houses down from our house so she can shoot baskets. She loves it! She also was excited to meet a new friend who has moved in down the road from us. Lizzy and Bethany may be spending a lot of time together this summer. It should be interesting.

Thanks for checking in with us and for your prayers and support. We appreciate it greatly!

Love,
Janene

Saturday, March 6, 2004 3:39 PM CST

Hello Everyone,

What a beautiful weekend it is in Kansas. Joshua has been feeling very good today. We went on a long trek around the neighborhood and ended up playing in the mud. For those of you who are familiar with what our lawn looks like after a big rain, you will understand. We have what we affectionately call "Lake Freerksen" right beside our shed. Both kids took off their shoes and ended up having a blast in the mud. It was great to sit and watch them play like that. What a blessing!

My life seems to have slowed to a crawl. Others around me are rushing around as busy as ever like I remember so well. I feel like I am moving in slow motion while the world around us is in a blurr. When I go to the store, it's a jolt back into reality. I have been spending a lot of time going over the events of the past year and just pondering. It's kind of like I'm in a world of my own. That world is telling me to not worry about the things I used to think were so important. That world tells me to sit down and watch my kids play in the mud. And, that world tells me that I am a different person than who I used to be. I like this world right now. It's a bit lonely at times, but for now I'm content to stay at the pace of a crawl and to embrace the opportunities to sit and ponder about purpose, life and eternity and enjoy each minute along the way.

Thanks for checking in on us. Joshua sends love and hugs your way and much gratitude for your continued prayers.

For His Glory,
Janene

Friday, March 5, 2004 11:02 AM CST

Good morning everyone and Happy Weekend!

Joshua continues doing well and feeling great. He seems no worse for the wear after his little one day sickness. He is excited to go to Chick-Fil-A this evening with Grandpa and Grandma. It appears that chicken nuggets from there are his new favorite food item.

We will be doing extensive scans in April at Children's Mercy. I guess a bone scan, CT and MRI are on the works for the 13th. Doesn't sound like a very fun day to me:(

Well, I guess no news is good news for now. Thanks for your continual prayers and support as we continue this journey with Joshua.

For His Glory,
Janene

Thursday, March 4, 2004 4:43 PM CST

Hello Everyone!

Joshua woke up feeling fine and has done well all day. We had our regular scheduled clinic appt. this morning which was really just a checking in with the doc type of appt. His counts are fine and we will be scheduling some heart and lung tests soon along with the CT and MRI we should of had already.

Dr. Watanabe is great and we appreciate all he has done for Joshua so much. He is the most unselfish oncologist I have met throughout this past year and we owe him a huge debt of gratitude in that Joshua is still here with us.

So, whatever the problem was the other day seems to be gone. Joshua is happy and feeling great. He is excited because Grandma Della is on her way to Kansas City and will be staying here tonight with the kids while Craig and I are at Christian Challenge. (Thanks Mom:))

That's about it for now. Thanks for checking in with us and for your continued prayers on Joshua's behalf.

Have a truly wonderful Thursday evening!

Love from Topeka,
Janene

Wednesday, March 3, 2004 7:22 AM CST

Good Morning

Joshua woke up screaming, throwing up, feeling like he had about a 101 fever. After he threw up, his fever went down to under 100, so we are just watching him and waiting. The magical "call the doctor" number is 100.5, so we could easily be headed back to the hospital sometime today. It's possible he just has picked up a bug, but with his central line, they will likely need to culture it and make sure it's not a transplant issue. So we are watching and waiting today and hoping to avoid another hospital stay in our few weeks at home.

I'll write more later...
For His Glory,
Janene

PS
Joshua spent the rest of the day with a low fever that never went up high enough to call the docs. Then around 5:00 PM, his fever fell back to normal. He acted like he didn't feel very well all day, but never threw up again. I don't know what it was, but I'm hoping it's gone for now:) Thanks to many of you who have been praying today. You are the greatest!

Tuesday, March 2, 2004 10:34 PM CST

Hello Everyone,

Just wanted to write a short note and let you all know Joshua continues to do well. I had a few minutes of fear today when he seemed to be warm and feeling a bit nauseous. But, he did OK the rest of the day and we hope he continues to avoid getting sick.

On Thursday morning, we will go to KC to the clinic at Children's Mercy for a routine visit. Then, we may take a detour and see Aunt Nette's new residence. She just recently moved and we haven't gotten to see it yet.

In 12 days, we will celebrate our year anniversary from when this journey started. When I turned the calendar to March a few days ago, I started having flashbacks to those days a year ago when we were wondering what was going on with Joshua. Who would have guessed what this year would hold. We are filled with gratitude to God for helping us through this past year and we look forward to the uncertainty of the coming year only because we know He will be walking with us side by side.

May you know personally the joy and peace He offers each of us!

For His Glory,
Janene

Saturday, February 28, 2004 11:01 AM CST

Good Morning from Home:)

Joshua and I arrived home late last night after a long day. We did get a corporate angel flight and flew from Teeterboro NJ to Topeka, KS. We were in a tiny prop plane that could seat 6 people. I'm very thankful that it was a smooth night for flying because I would hate to ride a plane like that with any weather!!!

The pilot was wonderful and had Joshua come up and sit with him in the cockpit for about an hour of the first leg of the flight. He put the plane on auto pilot and told Joshua he was flying the plane. Joshua had a blast and even wore the headphones and talked with some control tower someplace. When Joshua finally finished and came back to sit with me he informed that the back of the plane was "boring". He now says he wants to be an airplane pilot when he grows up. Wouldn't that be wonderful!

Joshua's week of antibodies went about like we have been expecting. His pain came later with each infusion, but when it came...it came hard. The 4 doses of dilaudid were always used, but it didn't help as easily as our last round. We are slowly getting to know the folks at Sloan and enjoy the relationships with the other families and the nurses and doctors. This whole week we had the privilege of sharing our room with Susan and Nathan Gentry. Nathan is a little bit younger than Joshua, but they were diagnosed with NB within weeks of each other. They are at the same point of treatment as we are and it was great to spend time with them. Joshua was excited to go see Nathan each day and loved Susan as well.

One of his other favorite people in NYC is Cathernine or Cat as everyone calls her. Cat is one of the 3F8 nurses who we deal with regularly. She is a wonderful, caring person who is the only person in the world I will ever let call Joshua "Joshie".

This week when we went into clinic each morning, Joshua looked for Cat and Nathan first thing. I'm glad he's feeling like he's getting to know some friends in our home away from home.

While we were in NYC, Joshua received 17 GMCSF shots, 1 blood transfusion, 10 rounds of 3F8 Antibodies, 39 doses of dilaudid, 20 doses of bendaryl, 19 doses of vistaril, 10 tylenols, 3 days of SSKI drops, a MIBG injection, and MIBG scan and most importantly...(drum roll please) decided that he preferrs Wendys to McDonalds. Go figure:)

On Thursday, Joshua did get an MIBG scan at Sloan. This is a scan they will do every 3 months or so to check if the Neuroblastoma has returned. As any parent will tell you, scan day is incredibly difficult. It's hard to realize and come to terms with the fact that this monster could easily come back and that if it does it will likely be with extreme vengeance. Being at Sloan is not comforting because the reality of Neuroblastoma is so evident when I am there. I am constantly reminded that the numbers aren't good and that Joshua's life is in God's hands.

Thanks again for checking in with us and for your prayers for Joshua during these last weeks in NYC. We appreciate you all and want you to know how much we thank God for you.

For His Glory,
Janene

____________________________________

Note!!!!!
Dr. Cheung did tell me on Friday that the MIBG scan looked OK. I should know the full results sometime next week. The following is something I wrote on Thursday evening while working through my experiences of the day.

_____________________________________

Scan Day

This morning I woke up with a pit in my stomach, for today was scan day. Today was the day Joshua would lay on a table while cameras took numerous pictures of his body to check if this monster, we have worked so hard to defeat, has come back.

We got ready for the day as normal, but every step of the way I found myself wanting to run away. I’ve heard the statement that knowledge is bliss, but in this case knowledge was the last thing I wanted. This type of knowledge hurts too much and a few days of ignorance would be a relief when faced with this type of pain.

We went to the play ground before going to the hospital to give Joshua a few minutes to play like a normal child. He played with a few children and loved every minute of it. It struck me once again that while other children were trying to figure out which slide to go down and which friends to play with today, my son would be laying on a table, being subjected to numerous medical technologies that, when finished, would tell his dad and mom whether he would live or die. I saw the stares of the other mothers that asked “why is that 5 year old riding in a stroller?” I wanted to yell, “just leave me alone…I have to take him to people who will tell me in the next few days whether I will bury my son or watch him grow up a little while longer.

The scans went OK for scans. The technician didn’t understand what these scans mean or he would have acted like he cared. How could I explain to him that what is routine for him means the world to us. How could a few pictures make so much difference you ask? One way, he lives…the other way, he dies. The pictures tell me whether I will be holding Joshua’s hand as he walks for the first time into his kindergarten classroom or whether I will be holding his hand as he leaves this earth and enters the doors of heaven. The reality is heavier than anything I have ever experienced. The weight makes it feel like you can’t breathe and that you might crumble at anytime breaking into millions of pieces.

Joshua finished the scans and asked “was I a good boy?” What’s a mom to say? How could I even begin to explain to him how good he is? How could I even begin to explain what a special gift he is and what kind of void he would leave if he weren’t here? How could I describe the way he has climbed into my heart with such a pure and simple love. There aren’t words to explain how a part of my heart is his forever and ever and that part of my love will always belong to him. He would never understand, and I will never, ever be able to explain them. So I said “Yes, Joshua…you were a very good boy!”

Next came the antibodies, and along with them the pain that has to resemble Hell itself. Then the recovery and now we are home. I am sitting in a bit of a fog wondering what happened. I saw the mysterious uptake on the scans and I very well know that I could hear tomorrow that the monster is back. And, I know all to well what that means. So tonight the only thing I can do is fight for the peace that is ours because of the ultimate fight done so long ago on the cross. Jesus died so that peace could be mine tonight and every tomorrow. Yes, it is a fight to own that peace, but one I must take on in order to enjoy the gift of today with Joshua. It is far too precious to do anything else.

________________________________________

Sunday, February 22, 2004 1:25 PM CST

Hello Everyone,

We have had a good weekend in NYC in between weeks of antibodies. Yesterday Joshua and I walked all around the upper East side of Manhattan doing a little shopping. Today we've been hanging out and may try a trip to Times Square yet later this afternoon.

He has been feeling great and has no pain or other discomforts at this time. Last night at Supper, I looked at him and was struck by how "normal" he is looking. Again I was reminded to enjoy today because he is currently feeling good and living without pain, and there are no guarantees about tomorrrow.

Tomorrow we will begin week #2. We will be going to the clinic early this week and will have the first round. That means we should be in by 8:30 and out by noon hopefully. Please pray for Joshua during this week. He has so much to endure that is so extremely difficult and painful.

Thanks again for checking in with us. We plan to be home Friday evening if at all possible.

Much love from NYC,
Janene

Friday, February 20, 2004 6:31 PM CST

Hello Everyone and Happy Weekend!

Joshua has one week down and one to go! This week has been a tough one for him. The pain has been more intense and lasting longer than it did for round 2. We have been a bit surprised. He is handling it like a trooper and he has had much to handle!

I am glad we get the next 2 days off and am very anxious to come home. I'll write more later cause I need to get back to Joshua. Thanks so much for your prayers and support.

Love from NYC,
Janene

PS The bone marrow biopsies done 1 week ago came back clean. That was our good news for today:)

Tuesday, February 17, 2004 12:59 AM CST

Hello All,

Joshua is in the middle of Treatment #2 as I type. Yesterday was tough on him, but he was a trooper and handled it as well as can be expected. The pain comes early on the first day of treatment and lasts a little while longer. He had 4 doses of dilaudid as usual and could rest after the 4th dose.

The bone marrow aspirates and biopsies went fine Friday. Thanks to many of you who were praying specifically for him that day. We are waiting for the results and should be hearing them any time. I had a nightmare last night about positive bone marrow and am trying to not let fear rule my heart at this point.

I will be flying to NYC tomorrow afternoon and am excited to see Craig and Joshua. Craig said last night Joshua was dreaming talking in his sleep about me coming to see him. These separations are not easy on him.

Craig will fly home Thursday for Christian Challenge and I will hopefully fly home with Joshua a week from Friday after his final treatment for this session. We're looking forward to most of March at home:)

Thanks again for checking in with us and for your continual prayers on behalf of Joshua.

For His Glory,
Janene

Friday, February 13, 2004 10:18 AM CST

Hello Everyone

Craig and Joshua arrived in NYC very late last night after many delays. They were lucky to get in when they did because all the planes out of Atlanta were "very" delayed due to weather.

They went to the clinic by 6:00 AM and were done by 9:00 AM. They are presently back at the RMH resting. Joshua did great today. Thanks to many of you who were praying so diligently. He handled the bone marrow biopsies and aspirates like a pro. They also were able to re-stitch his central line and said it looked good and put in a needle catheter in his leg so that we can infuse the medicine through that instead of using countless shots. One big hurdle down and 10 more to go.

Craig does such a good job with Joshua when they go just the 2 of them. Craig makes friends with all the staff, while I tend to get to know the families. I guess all in all we make a good team. Joshua is a lucky boy to have a dad who can and will walk through these times with him side by side. So many don't have that and I often remind both Bethany and Joshua that they have the best dad in the world.

Well, that's all the news for now. I am busy doing Bethany's class party today for Valentines Day and will go on a field trip with her and her class Monday. Then, I should be free to start packing for NYC.

Thanks again for checking in with us and for your continual prayers on behalf of my son.

For His Glory,
Janene

Exodus 3:14
God said to Moses, "I AM WHO I AM. This is what you are to say to the Israelites: 'I AM has sent me to you.'"

Monday, February 9, 2004 7:42 PM CST

Hello Everyone,

Just wanted to write and say we had a great weekend in Newton. Joshua felt great and enjoyed playing and laughing with Grandma Della at her house.

We are incredibly grateful to her church family, Koerner Heights, for doing a Soup Luncheon to benefit Joshua on Sunday. Around 300 people came, and it was great to see many friends and family we do not see often. Special thanks goes to Clara Regier, Carol Schrag and Joyce Martens for their hard work. We appreciate you and the many helpers you had for this event.

Joshua also was privileged to make it onto the front page of The Newton Kansan. He saw the paper with his picture in it and commented "how cute!" I think he feels it's normal to always be the center of attention.

Joshua is feeling very good. We are so grateful that he hasn't been sick and know that God is protecting him graciously during this period of low immunity. I am watching him become more active and more creative by the day. He is such a fun kid to be around. Again, I am so blessed to be Joshua's mom for however many days I am given. He is truly a special gift from God.

Craig and Joshua will hopefully be taking a Corporate Angel flight on Thursday. We will hear tomorrow to finalize it. I will fly down on Tuesday so that Craig will return Wednesday night. Here we go again...ready or not.

Thanks again for checking in on us. We appreciate each of you and thank God for you. May His blessings overwhelm you as you spend this week following hard after Him.

For His Glory,
Janene

"Give me one pure and holy passion
give me one magnificent obsession
give me one glorious ambition for my life
to know and follow hard after you.

To know and follow hard after you
to grow as your disciple in the truth
this world is empty, pale and poor
compared to knowing you my Lord

Lead me on and I will run after you.
Lead me on and I will run after you."

Saturday, February 7, 2004 2:40 PM CST

Hello Everyone,

Hope you all are having a great weekend. It seems to have finished snowing for a while and the sun is out. It is truly a beautiful day. Both Joshua & Bethany have enjoyed the snow so much. I'm glad Joshua has been feeling well enough to want to enjoy it. He has had a blast and continues to feel very good.

This weekend we are going to Newton where my mom lives. We haven't been to Newton as a family for over a year. My mom's church is doing a lunch after church tomorrow to benefit Joshua. We are grateful for their generosity and are excited to see some faces we haven't seen in a very long time. We will take Joshua in a mask so that he can say hi to so many people who have been praying so diligently for him.

We sent Joshua's blood to NYC and will hear on Tuesday or Wednesday about whether he is still HAMA negative. We are expecting he is still negative and we will be leaving Wednesday or Thursday for NYC. Craig will be going with him and I will be leaving next week to go tag team with him, which we are getting rather good at. We'll begin the GMCSF injections this Wednesday and he will have bone marrow as aspirates done on Friday. Friday will be an extremely difficult day because Joshua dreads Bone Marrows worse than anything else. I don't blame him cause I don't think I would relish having someone stick a huge needle in my hip and into my bone to draw out marrow to test for Neuroblastoma. And to make it worse, they do it at 4 places at Sloan and it is a miserable experience. They put him out for it, but he seems to understand the invasion and despises it with a passion.

I better run so we can leave for Newton. We haven't gone 2 hours out of town as a family (besides NYC) since March. Thanks for checking in with us and for you continual prayers and support for our Joshua. We appreciate it more than we could ever express.

With Hope,
Janene

Thursday, February 5, 2004 12:40 AM CST

Hello Everyone,

It is snowing like crazy! It looks like a blizzard outside. Bethany was already off school today because of Parent Teacher Conferences, but we are even cancelling our Christian Challenge meeting for tonight cause it's a bit of a mess.

Joshua continues to do well. We had labs drawn here in Topeka last night and he is doing alright. His hemoglobin is on the verge of needing a transfusion but I'm hoping he will be OK and be rising on his own in the next few days.

I don't have much other Joshua news to report other than continued hair growth and more and more laughing and playing. Yesterday we actually were getting close to a real fight between him and Bethany. While other moms get upset about their children fighting, I usually just smile because they have had so few opportunities to be together enough to fight. It's a blessing to hear them being normal brother and sister together.

That's about it for the Freerksen Neuroblastoma & Joshua news. All is well for now. I'll write more later.

For His Glory,
Janene

Monday, February 2, 2004 9:30 PM CST

Hello Everyone,

I hope you had a great weekend! We had a bit of a lazy one. Craig and I left the kids with Russ & Marsha on Friday and went out for a few hours. Then we traded and kept their kids on Saturday so they could go out. It's great to have such good friends who have stood beside us throughout this journey...Thanks guys:)

We did get quite a bit of snow, although it didn't end up being as big of a deal as forcasted. I believe we got around 8 inches and that was enough for Bethany to be home from school today and Craig since Washburn also cancelled. Craig made a snowman and Bethany decorated it with the snowman kit from Uncle John & Aunt Mary. She is so creative and added some "Bethany" touches which were quite adorable.

Joshua continues to feel well! Today we noticed that his skin is starting to peel on his lips and face. We have 6 more days of accutane and I'm really hoping it won't get too bad for him. He has been a bit emotional which is probably due to the accutane. On Thursday this week, I will draw his blood and send it to NYC to test for HAMA. I am almost positive that he is HAMA negative still because of the pain he experienced during the last treatment. We will plan on being in New York on Feb. 13th.

That's about it for now. I'm glad to report nothing overly exciting is happening these days in the Freerksen household. We're just enjoying some incredibly sweet fellowship with a 5 year old boy who is happy to be home. Thanks again for checking in with us and for your continued prayers on his behalf.

In Hope,
Janene

Friday, January 30, 2004 4:28 PM CST

Hello Everyone!

Happy Friday to you! Joshua continues to do well. We were at KC yesterday and spent the afternoon in the clinic. We had them look at his central line which has migrated out of his chest about 1 cm. They said it was still secure and should be fine so we are hoping that is the case. We also had labs done which looked OK!

His extended imune deficiency panels showed his CD4 count is now 57. That means his immune system is still in the very slow pocess of rebounding after transplant. His CD4 count will be 500+ when his immune system is fully mature. That just means we will continue to protect Joshua from sickness as much as possible. We will likely be doing masks till Spring at least. I'm glad he is so agreeable to things like that.

Joshua is doing well on accutane. Today is day 5 of 14 for the first round. We haven't seen any of the dry skin or mood swings so many parents describe. Thanks for your prayers on his behalf.

We got another decline from our insurance in regards to Joshua's treatment in NY. We will be appealing that decision and are hoping for positive news at that point.

I want each of you to know how incredibly blessed we are. The footsteps of God right beside us have been unmistakable since March. I am continually amazed at the tiny details that God orchestrates in our lives to remind me that He is here and He still loves us and He is in charge. The reality that the God of the Universe loves me enough to orchestrate the tiny details of my trials blows my mind. That has probably been the most astounding thing I have learned since I first heard the word Neuroblastoma on March 14th. And, the opportunity to learn about Him has been perhaps the greatest gift of all.

Last night, I was able to attend our Thursday evening Celebration service for our collegiate ministry...Christian Challenge @ Washburn University. I have not been able to attend a lot this year because of Joshua's battle and count it a privilege when I can join Craig in our ministry and purpose. One of our students had just returned from 6 months with the military and was sharing a word of personal testimony that really spoke to my heart. He shared that in his 6 months of military training, he was taught that nothing matters...not even life or death. The only thing that matters to a soldier is his mission.

Once again I was challenged that cancer, life, death, antibodies etc. are all things that can get my focus off of my mission. A soldier of Jesus Christ focusses on Him and the purpose He gives. That is the only way to find true and lasting peace that passes understanding.

II Timothy 2:4
No one serving as a soldier gets involved in civilian affairs-he wants to please his commanding officer.

That's it for now. Thanks so much for checking in with us. We love you and are so grateful for all you do to support us and encourage us during these times.

For His Glory,
Janene

Tuesday, January 27, 2004 9:27 AM CST

Good Morning!

It is cold this morning, but Joshua is cozy warm and feeling great. He is happy to be home and is content to stay inside and relax.

We did start accutane yesterday. I went out and bought numerous different skin products that have been recommended to me for the bleeding, cracked skin that accutane usually results in. We're putting them on already and hoping we can be pro-active in making this somewhat managable.

That's about it for now. We're still waiting on insurance news and information from Children's Mercy in regards to tests we might be doing there soon.

Have a great Tuesday!
With Love & Gratitude,
Janene

Saturday, January 24, 2004 4:11 PM CST

Hello From Topeka!

Joshua and I arrived home late last night. Craig and Bethany met us at the airport after a very long day. We are very glad to be home and have been in the midst of unpacking and situating.

Joshua's last treatment went about the same. He had substantial pain, but recovered quickly. We were back at The Ronald McDonald House by 11:30 AM and our car was there to pick us up at 2:00 PM. Joshua was still a bit drugged on the dilaudid, but did well traveling otherwise. When we got on the plane, he went up to the stewardess and asked if he could say hi to the pilot. So, we had yet another look around in a cockpit with a very nice pilot.

We will be home for the next 3 weeks and should be doing some tests at Children's Mercy for regular post transplant stuff. We will be testing his immune system to find out whether his immune system is matured or not. Hopefully we will also be testing his hearing and some other things soon to be known.

We expect an uneventful few weeks and we welcome it. Thanks so much for checking in with us and for your prayers on behalf of our son. We love you and appreciate you all greatly.

With Hope,
Janene

Thursday, January 22, 2004 5:31 PM CST

Hello Everyone!

Nine down and one to go! We are almost all packed and will be leaving for the airport soon after Joshua is done in the clinic. We were unable to get a Corporate Angel flight again and will be flying Air Tran to KC. We'll be home at 10:14 PM I hope! (You never know with Air Tran)

Today went OK! Joshua and I were back here by 11:30 AM. I hope tomorrow goes as quickly. Thanks for checking in with us and for your constant prayers and other support. You are greatly appreciated and loved!

For Him,
Janene

Tuesday, January 20, 2004 1:17 PM CST

Hello Everyone,

We now have 7 treatments down and 3 to go. Joshua has done OK these past 2 days with his treatments. Being here, I am again reminded how difficult they are.

Joshua goes to the clinic very willingly. He braces for the pain and when it comes he says "It's here". Then we snap into action...I start the oxygen for him, the nurse is giving him pain meds and benadryl to stop the hives and we wait it out. Joshua usually wants me to sit with him on the bed and put his pillow in my lap. He lays on the pillow until the most intense pain. Then he sits up quickly and starts panicing at the worst pain. That's when I have to remind him to breathe and he needs the oxygen the most. I think the pain is so intense that he panics and doesn't think he can breathe. After the 4th dose of dilaudid, he is usually able to fall asleep. Then he sleeps, wakes up and we wait to make sure the hives are going down before coming home. In the afternoon he is awake most of the time and is a bit out of it initially. I call it his "dilaudid state". He wants to stay at The Ronald McDonald house and either play computer or game cube or something of the sort.

That's it in a nutshell. He is a trooper and I'm amazed at his attitude and willingness. He won't leave the clinic without giving anyone in the close vicinity hugs. He is fast being known as "the hugger".

We don't know for sure when we will be home. I am hoping for Friday, but havn't gotten an angel flight yet. We will be starting a new medicine on Monday called Accutane. It is the final phase of our treatment which will be 2 weeks on and 2 weeks off of the vitamin A derivative. This will last for 6 months. Hopefully by the end of accutane, we will also have reached HAMA and will be done with antibodies as well.

Thanks so much for checking in on us. We appreciate your prayers and support during this time.

For His Glory,
Janene

Saturday, January 17, 2004 4:34 PM CST

Hello From NYC!

I got in very late last night after delays in KC and Atlanta. Craig and Joshua surprised me and met me at LaGuardia. We had a great "Late" evening!

It's cold here and they are expecting snow and sleet in the morning. We may be staying in tomorrow:)

Joshua has so much hair now that he almost looks like a normal kid with a short haircut. It's amazing! It is sure dark. I am anxious to compare pictures with "before cancer" pictures.

I don't have much new to report. Friday went about the same for Joshua's treatment. He seems to be handling things OK. We continue to pray that the antibodies are doing their job and will get rid of any residual NB and keep this monster from returning.

Thanks so much for checking in with us. Craig is sitting on the runway at LaGuardia waiting to take off as I type this message. He will be home hopefully very late tonight and will pick up Bethany tomorrow morning before church.

I'll update more later! Thanks for your continual prayers and support.

For His Glory,
Janene

Thursday, January 15, 2004 6:08 PM CST

Hello Everyone,

Tomorrow I get to fly to NYC and see the 2 best guys in the world! I am anxious to see them and am waiting for those hugs!

Craig reports that Joshua did a little better today. The pain was perhaps a little less and after he slept, he walked out to get the stroller! That is a "big" difference because always before, we went to get the stroller and put him in it directly from the bed. That means he is feeling and doing much better than last time!

He is still needing 3 doses of dilaudid and in in substantial pain, but we are pleased with his improvements. I am hoping to be able to do some fun things with Joshua this weekend, but lately it has been just frigid in the city so I guess we'll see.

That's about it for now! Thanks for checking in with us and for your continued prayers on behalf of Joshua. It means a great deal to all of us.

In Love & Hope,
Janene

PS The words to this song were a very special gift from God, straight to my heart this week. I pray that God will be showering His sweet mercies into your hearts and lives as you seek after Him!

_____________________________________________

It's our confession Lord that we are weak
so very weak, yet you are strong
And though we've nothing Lord, to lay at Your feet
We come to Your feet and say help us along.
A broken heart and a contrite spirit
You have yet to deny.
Your heart of mercy beats with love's strong current
Let the river flow
by Your Spirit now, Lord, we cry
Let Your mercies fall from Heaven
Your sweet mercies flow from Heaven
New mercies for today
Shower them down, Lord as we pray

*Sweet Mercies by The Passion Band

Wednesday, January 14, 2004 4:09 PM CST

***Joshua is now done with 3 antibody treatments. He is doing OK with them! He is still having severe pain, but he seems to be pain free afterwards. Craig says he is very tired and wants to sleep during the afternoon which is totally unlike him:) Thanks so much for your prayers on his behalf. It's a painful 2 weeks for anyone, especially when your 5!

_________________________________

Hello Everyone,

We have an urgent prayer request! Most of you know that we have been trying to get Joshua's treatment at Sloan Kettering approved by our insurance. We have been working on this for several months now and have received very discouraging news.

Our insurance is through the Southern Baptist Annuity Board. The Annuity Board is "self insured" and uses The Principal as their insurance administrator. Our insurance contract prohibits any treatment that is of investigational nature and the administrators cannot approve our appeals without the Annuity Board telling them to do so. Craig has spoken with numerous people at The Annuity Board and heard today that it is very unlikely for them to OK this treatment and allow payment.

What this means is that all of Joshua's treatments (4 months to 2 years) at Sloan will be out of our pocket. Also, if Joshua relapses, all studies that would be available to him are Phase I or II and therefore not covered under our insurance.

We are talking about a lot of money and it is a scary thing when your son's life depends on it.

One friend of ours is working on this on our behalf because he used to work at The North American Mission Board and knows a lot better than us who to speak with. We appreciate his efforts and are praying that he might be instrumental in helping us get this miracle for Joshua.

Please pray with us that God's will would be done in this situation. We think that should be the insurance paying for this treatment, but if we've learned anything since March, it's that God's ways are higher than ours. He is sovereign and knows Joshua and his Neuroblastoma better than we do. We must trust Him! And, we must pray! Thanks for joining us in this journey!

For His Glory,
Janene

Monday, January 12, 2004 4:06 PM CST

Hello Everyone,

One treatment down, 9 to go! Craig reports that Joshua did OK today. They were back to the Ronald McDonald House by noon. The pain came earlier and was a little more intense than what we ended with 3 weeks ago. He did not get hives and has been groggy, but pretty much pain free this afternoon. He needed 3 doses of dilaudid today which is 2 less than what we started with 3 weeks ago. I guess we will judge the pain level by how many doses of narcotics he gets for the day.

Tomorrow, they will have the 2nd shift at the clinic. So, they can stay home for most of the morning and be back home by mid-afternoon. That is probably our preference while in NYC because Joshua likes to stay up late and then we don't have to wake him in the morning.

That's about it for now. Thanks for checking in with us and for your constant prayers and support.

For His Glory,
Janene

Psalm 18:31-34
Who is God besides the Lord? And who is a rock except our God? The God who equips me with strength, and makes my way blameless, who makes my feet like those of a doe, and makes me stand firmly on my high places, who trains my hands for war; my arms can bend a bow of bronze.

Saturday, January 10, 2004 3:15 PM CST

11:00 pm update......
Craig called and they are in their room at The Ronald McDonald House in NYC. All went well, despite having very few minutes to change planes in Atlanta. Thanks again for your prayers. They are in room 905 and the contact information is at the bottom of this page!
______________________________

Well They're off!

Craig and Joshua just left for the airport and my heart is broken! It's so incredibly hard to say goodbye to your child and send him for 2 weeks of undescribable pain. Joshua didn't want to go, but went easily as usual. I'm so tired of all this and want it to be over!

I will fly out late Friday and Craig will return Saturday. Thanks for your prayers for Joshua as he has to endure these 2 weeks. Pray also that we would be obedient to whatever we are supposed to be accomplishing through this whole journey. We don't have a clue what that is and often feel we are barely keeping our heads above water.

Thanks again for checking in with us!
Janene

I Thessalonians 5:24
The one who calls you is faithful and he will do it.

Friday, January 9, 2004 3:24 PM CST

Hello Everyone,

Joshua will be done with his last radiation treatment within the hour! It has been a draining week, but one we feel was necessary. Joshua continues to do well, and makes even a week of driving to KC fun! He is so happy that sometimes I just watch him in awe. I think sometimes that God gave him to me for a little while just to show me how to live life with joy! Thanks Joshua for being my continual teacher.

Craig and Joshua will leave tomorrow afternoon for New York. I will go next weekend so that we can switch half way through. Joshua does not want to go and we fervently hope that the 2 weeks will not be horrible for him.

We continue to appreciate your prayers on behalf of our insurance covering Joshua's treatments. The decision is now going to be made by the Southern Baptist Annuity Board and we are waiting on some information from them about how we will proceed with this issue.

That's about it for now. Thanks for checking in on us and for your continued prayers on Joshua's behalf. Last night I was reading a book by Amy Charmichael called "If". She was a missionary that lived in the early 1900's. She ends with the following quote:

"Let us end on a very simple note: Let us listen to simple words; our Lord speaks simply: "Trust me, My child," He says. "Trust me with a humbler heart and a fuller abandon to my will than every thou didst before. Trust me to pour my love through thee, as minute succeeds minute. And if thou shouldst be conscious of anything hindering the flow, do not hurt my love by going away from me in discouragement, for nothing can hurt love so much as that. Draw all the closer to me; come, flee unto me to hide thee, even from thyself. Tell me about the trouble. Trust me to turn my hand upon thee and throughly to remove the boulder that has choked thy riverbed, and take away all the sand that has silted up the channel. I will not leave thee until I have done that which I have spoken to thee of. I will perfect that which concerneth thee. Fear thou not, O child of my love; fear not."

_________________________________

Have a great weekend!
For His Glory,
Janene

Wednesday, January 7, 2004 8:17 AM CST

Good Morning All!

Joshua continues to do well. We now have only 3 more days of radiation to go. He is a bit nauseous from the treatments and will likely experience a bit of a sore throat here soon since they are radiating his neck. Other than that, it's no worse than the driving to KC every day. Yesterday we came home in between treatments to see Craig. He arrived home about 1:30 PM yesterday from his conference in Oklahoma with our students. So, our cars are getting used to the road to KC again for this short time.

We are waiting to hear from Corporate Angel Network about our flight to New York. They haven't called yet, so we are doubting that they have one for us. We may be taking a regular flight again...we're just waiting to see. Since Joshua has radiation treatments through Friday, we aren't as flexible as before which really helps them insure a flight.

Joshua will begin treatment on Monday morning. He is horribly upset about it and wants nothing to do with NYC, Ronald McDonald House, clinics or airplanes to get him there. He just starts crying and saying "No, not bone marrows". The treatments are well remembered, but the bone marrow aspirates are the most tramatic. Please pray that God would once again give him the strength and grace to make it through a very difficult few weeks.

We still have many questions about insurance and would welcome any and all prayers as we are getting very close to our next treatment. We are hoping to hear word very soon, but are somewhat doubtful about hearing good news. Thanks for your prayers on behalf of Joshua.

That's about it for now. Thanks for checking in with us.

In Hope,
Janene

F - or
A - ll
I
T - rust
H - im

Sunday, January 4, 2004 11:36 AM CST

Good Morning Everyone,

Joshua continues to do well. This weekend Craig is in Oklahoma City with our college students at a conference, so the 3 of us are home taking it pretty easy. Joshua is content to stay put.

We had 2 days of radiation treatments last week which went well. My wonderful husband talked them out of doing more tatoos on Joshua's chest which was a huge relief to Joshua and me. He does have numerous marks all over done with sharpies. Yeah!

And yes, he again is given a teddy bear after each treatment. So, our 14 teddy bear friends will soon have 14 more friends to play with in Joshua's room. Joshua really enjoys the whole process and the people at The Kansas City Cancer Clinic. They have been truly wonderful to work with.

Friday we overnighted a vial of Joshua's blood to New York City. 2 weeks after every 3F8 treatment, they have to test his blood to see if he is HAMA positive or negative. If he is HAMA positive, it means his immune system is fighting the mouse antibody (3F8) and the treatment would be ineffective. So, we will do round 2 on the 12th as long as he is HAMA negative.

The goal is for him to stay HAMA negative until after the 4th round. After that, developing HAMA is a good thing. They feel like a HAMA at that point would mean that Joshua's immune system has learned to fight Neuroblastoma on it's own. That's what we are hoping and praying for. Lately though God is again reminding me that he is in charge and that he knows the desires of my heart, but I need to always recognize his sovereignty over our family and especially Joshua's life.

So, for all of you prayer warriors out there: We desire for this antibody therapy to destroy any remaining Neuroblastoma cells in Joshua's body and we desire for these treatments to be effective in training Joshua's immune system to fight NB on it's own. If these 2 things happen, Joshua should be in remission from NB for the rest of his life. Again...these are our desires, and we pray anxiously awaiting God's will and recognizing and submitting ourselves to His sovereignty.

The other side of the picture is that some of the children who are doing antibody therapy are not helped by it. They never reach HAMA and relapse and die in a matter of time. The doctors at Sloan are trying now to find the markers in the NB cells that would indicate whether or not they would respond to antibody therapy. But, for now we just don't know and need to leave that in God's worthy hands.

We appreciate your prayers on Joshua's behalf. In my quiet time this morning, I was reading in Daniel about King Nebachadnessar's 7 year absence from his kingdom. God took everything away and King Nebachadnessar lived in the fields as an animal until he was able to acknowlege God's sovereignty and His rule. My desire and prayer this morning is that I would not let my fear of NB be sovereign in my life and that I would let God be God. He has walked with us through this battle and has proven Himself faithful even in the shadow of death. He wants to be God, and I am going to let Him!

For His Glory,
Janene

Wednesday, December 31, 2003 9:09 AM CST

Good Morning!

As I write Joshua's update this morning, I am both looking behind us and looking forward. On the eve of 2004, I am in thoughtful mode! It has been quite a year for our family. 2003 was one I never could have imagined in my wildest dreams. I remember commenting to my best friend only days before Joshua's diagnosis that I didn't know how parents with really sick kids ever made it. I just knew I would never be able to make it through the challenge of a very sick child. I knew I couldn't emotionally bear living with the reality of my child dying.

Now, on the eve of the new year I realize that I was so right. I was incapable of those things, but God was not! He said "Here's Neuroblastoma" and then he walked with us every step of the way, putting miracles in our lives daily that helped us keep our heads above water. Barely sometimes, but none the less, above water. Only because of Him, I can say that we have made it through 2003. I believe He gave Joshua everything he needed to make it through every last horror he has endured this past year. I think He gave Bethany the spirit and attitude to help her endure much separation, fear and uncertainty. I believe He gave Craig the strength to be a rock for his wife, his children and our ministry in the most uncertain times, and I know He gave me the strength to face the biggest fear of my life...losing my son! Wow, that's quite a year. God has provided and has been faithful through every last detail of our lives and this battle we know as Neuroblastoma.

As I look ahead, I do so with some fear but mostly with assurance and peace. God has proven His love and provision to me over and over again. I know that no matter what, He will walk beside us and that He will be sufficient for us. And let me assure you that me being able to make those statements is perhaps the biggest miracle throughout this journey.

The words to the following song are the echo of my heart as I write this morning!

"Jesus, lover of my soul
all consuming fire is in your gaze
Jesus, I want you to know
I will follow you all my days.
For no one else in history is like you
And history itself belongs to you
Alpha and Omega you have loved me
And I will share eternity with you.

It's all about you, Jesus
And all this is for you
For your glory and your fame
It's not about me
as if you should do things my way
You alone are God and I surrender to your ways"

Lastly, we have been so blessed by each of you who have supported and encouraged us every step of this journey. We are so grateful to you and to God for placing you in our lives. Thanks for walking with us along this journey.

For His Glory,
Janene

Ephesians 3:20, 21
Now to Him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

Monday, December 29, 2003 1:21 PM CST

Hi!

Joshua and I spent the morning in KC at the Clinic. It was fairly non-eventful. I am still waiting to hear about his blood work, but don't expect anything too exciting.

When we got home, I almost immediately received a phone call from our radiation clinic in KC. They asked if we could bring Joshua back to KC this afternoon to do the pre-radiation tests etc. so we can begin Wednesday. Since we have to be done next week, we didn't have much of a choice. So, Craig and Joshua will be leaving in a few minutes to go start our 2nd radiation process.

We would greatly appreciate your prayers for wisdom in regards to this round of radiation. Sloan Kettering is recommending radiation in Joshua's neck and in his chest. The neck is expected, but we were somewhat surprised about the chest because that carries some greater risks being so close to his heart. We respect Sloan Kettering's views, but do not want to risk damage to Joshua's heart. Craig will be hearing the risks this afternoon and we will need to make a decision by Wednesday when we begin.

Please also keep praying for Joshua. He wants to be home so badly and will now be traveling to KC up until we leave for NYC. He is such a trooper through all of this, but even his limits are being severely tested.

Thanks again for checking in on us and for your continued prayers.

For His Glory,
Janene

Saturday, December 27, 2003 11:21 PM CST

*New Pictures in the photo album!

Hi Everyone,

Just a quick note to let you know that Joshua is doing well and feeling well. We had a good day today. Our friends Sarah and Jonathan came over for the afternoon and Joshua enjoyed playing outside with them and playing the Game Cube and other computer games with them.

I'm glad he gets a few days to be a normal kid. Monday morning we will head to KC and have a routine clinic appointment. We will likely hear plans to begin radiation very quickly.

Many of you have been asking about our insurance. They did deny our first request for Joshua's treatment in NYC. We are in the appealing process and appreciate your prayers on behalf of this situation.

Psalm 136:4
Give thanks to him who alone does mighty miracles. His faithful love enfures forever.

For His Glory,
Janene

Wednesday, December 24, 2003 3:21 PM CST

Merry Christmas!

We are home together for Christmas and are very happy and grateful for each minute we have to celebrate the birth of our hope...Jesus Christ together as a family!

Craig and Joshua arrived home from New York early early Tuesday morning. Bethany and I picked them up from KC at around midnight and we finally got back home around 2:00 AM. We have declared it "Christmas" ever since.

We celebrated with part of my family last night and we will be with part of Craig's family tonight and tomorrow. We are blessed beyond measure this holiday season and we wish to thank each of you who have played such a vital part in this journey God is directing us through.

Merry Christmas from The Freerksen's
Much Love from Craig, Janene, Bethany & Joshua

PS I do want to share a short journal I wrote during the first week of Joshua's treatment in New York City. I will call it "Christmas and Antibody Treatments"!

_____________________________________________

This week, I watched my 5 year old son Joshua experience more physical pain than anyone I’ve ever seen before in my life. We have just arrived in New York and have started 3f8 antibody treatments that will hopefully get rid of the neuroblastoma in Joshua forever and ever.

Each day, I watched as they infused those antibodies into my little boy and then waited for the pain to hit. It did come...and it was stronger than I could ever have imagined. The first day, I could only watch in horror as my Joshua endured unimaginable pain. He couldn’t speak, but could only scream and thrash about on the bed. I tried in vain to comfort him and the hospital staff gave him dose after dose of strong pain narcotics to no avail. The pain had to run it’s course and all I could do was watch.

In the middle of the worst pain, God spoke some words of understanding to my heart. I had just been thinking that I would do anything to take the pain for my son and I would gladly endure anything at all if I could make the pain end for the son I love so intensely. That’s when God reminded me that it had been similar for Him. He looked down and saw a world in so much pain. He saw His children suffering from the intense pain of sin. Personally, He looked down and saw ME in the midst of the pain from sin that results in death. He knew that the death and pain that would result was agonizing and unending. But, instead of standing back and watching me, He did the only thing He could to stop my pain. He sent His one and only son that very first Christmas to die for me because that was the only way to save me from the pain and agony of death in sin. That pain must be similar to the pain I have seen Joshua endure from this treatment.

All I know is that my God must love me every bit as much as I love my Joshua, and likely so much more. I will be forever grateful that He sent His only Son to earth that first Christmas...taking my pain and my death on Himself because of His great love for me. I hope with all my heart that my life is a glorifying response to that kind of love.

Merry Christmas!

Friday, December 19, 2003 10:31 PM CST

Hello Everyone!

Isaiah 25:1
O Lord, you are my God; I will exalt you and praise your name, for in perfect faithfulness you have done marvelous things, things planned long ago.

I am writing this update from Topeka!!! When I walked in my front door very early Thursday morning, it felt like I was walking into someone elses house. I think perhaps, I've been gone toooooooooooo long:)

Bethany and I left NY late Wednesday and arrived here in Topeka after midnight. It was a very long day, but we are glad to be home.

Joshua and Craig are still in NY. Joshua is now finished with his first 2 week session of 3F8 treatments. Today was probably the best day of the entire session. His pain continues to be less intense and less in duration for which we are so very grateful.

Santa Clause came to the clinic today and gave gifts to the children. Joshua received a yellow backpack with many gifts inside. That was a nice treat.

Then the nightly string of Christmas parties at The Ronald McDonald House continued with more toys tonight. It's a good thing Joshua doesn't believe in Santa Clause because he would be one confused kid after seeing a different Santa come to the house so many days in December.

Joshua will be have bone marrow aspirates done on Monday and will then fly home late Monday evening. They are scheduled in at 10:00 PM Monday evening. It will be good to bring them home.

The plan is for us to be home for 3 weeks before going back for our 2nd round of antibodies. We did find out today that we will be doing additional radiation treatments in KC during those 3 weeks off. Joshua will be receiving radiation treatments to his neck and perhaps some other areas of initial involvement (where the tumors were upon diagnosis)

I am glad we will be receiving radiation, but am sad because I would like to be free from treatments for a little while before having to go back to NY. It seems never ending at this point and a bit overwhelming.

That's about it for now. Thanks for checking in on Joshua and for praying for him as he continues this battle.

For His Glory,
Janene

"All I have seen teaches me to trust the Creator for all I have not seen."
-Ralph Waldo Emerson

Tuesday, December 16, 2003 2:17 PM CST

Hello Everyone,

Joshua's treatment today went about like yesterday! I continue to see small improvements with the pain intensity and duration. Today, Joshua had a rough time for about 15 minutes, and then was resting fairly comfortably after that. The 3rd dose of dilaudid brings about some relief now which is different than last week.

We continue to meet wonderful people in NY...many who are also fighting Neuroblastoma. I'm thankful for the opportunity we have to develop relationships with some very dear families. Depending on how long our treatment here lasts...those relationships will likely grow from here on out.

Joshua's treatment was at noon today, so Bethany and I were out and about in NY City all morning. We went to Central Park and found the statue of Balto and made it to FAO Schwartz and The American Girl Place. 5th Avenue is a beautiful walk at Christmas time. I do love New York and am so thankful for the opportunity for Joshua to be treated here. We are also blessed by each of you who are praying so faithfully for Joshua and are our constant encouragers. Thanks for all you do!

We love you much and thank God for you!
For His Glory,
Janene

Monday, December 15, 2003 2:44 PM CST

Hello Everyone,

Thanks so much for checking in on us! We appreciate your support and prayers so very much!

Joshua had a much better day today overall! We waited and waited and waited in the clinic, but when it was all said and done, the pain was much more easily managed and when Joshua came back to the room, he went straight to the computer which didn't happen at all last week. He's a bit loopy still, but at least not in the kind of pain I saw so much last week. Thank you Jesus!

The weekend was good for us to be together. We did make it to Times Square once, but it was way too crowded to stay. Joshua has been very good about wearing his mask, but it was still too risky we felt. We stayed in Sunday and watched it snow. We got 5 inches and by this morning it was about all gone. The snow was followed by much rain that just melted it all away. Bethany was sad because she wanted to build a snowman this afternoon.

Tonight, we have a Christmas party here at The Ronald with a dinner and some officers giving out gifts. They say the NY Rockets will be stopping by as well. We'll see if Joshua's up to going by 7:00!

I hope you all are doing well! I am anxious to be home again and feel like we're back in some kind of routine. Thanks again for all of your prayers and support as we continue down this road!

For His Glory,
Janene

Wednesday, December 10, 2003 6:00 PM CST

Hello Everyone,

I intended to update earlier, but have been unable to because of Joshua's treatments. I'm sorry to report that the pain he has been in as a result of the 3f8 treatment has been the worst pain imaginable. I expected a lot of pain and had prepared for it, but in no way was ready for what I saw him go through beginning on Monday morning.

Joshua has a hour infusion every weekday morning. The first part of the infusion is pain free, but for a 10-15 minute period, Joshua is in the most intense pain I have ever seen in a human being. He is not able to speak, and is only able to scream and thrash. Then, it goes to a steady sharp pain for about 30 minutes and lets up slightly only to make another appearance for the afternoon. The pain from Monday's infusion lasted until 8:30 PM. Then he was fine! It was total insanity!

They give him either morphine or dilaudid and it does very little if anything for the pain. They say that time is what brings the pain under control. So...for now we are waiting. I have seen some improvement from Monday to Wednesday and am hoping for much more before coming home.

To be honest, seeing this has made me question much about Joshua's treatment and I have really struggled to watch my son go through something so horrible. God is faithful though...even in this. He gives grace and strength in the midst of the darkest times. I thank Him for that and pray for wisdom as we continue down this journey with Joshua.

Thanks for your continued prayers on behalf of Joshua. Craig and Bethany are flying here on Friday to be with us during this time. I'll update more very soon!

For His Glory,
Janene

Sunday, December 7, 2003 1:59 PM CST

Hello Everyone,

Well, the snow finally stopped and the last report I heard is that Central Park (just down the street) had 13 inches. The streets here look like Topeka with about 2 inches. It's amazing how a large amount of traffic, both foot and vehicle, keeps the snow from piling up.

Joshua isn't interested in the least in playing outside. He says, it's too cold. It didn't help when I was trying to maneuver the stroller on the snow packed sidewalk earlier today and hit a bump which landed him in a puddle. He wasn't too happy about that at all:(

Last night we went to our first Christmas party here at The Ronald. Chase Bank did a dinner and crafts and santa and gifts for the families here and it was very exciting for the children. Joshua was thrilled to see Santa Clause and thrilled with his construction set they gave him.

Tonight, there is another one...and so it goes. It should be an interesting couple weeks. Last night I was at a table with 3 other families with children having neuroblastoma. It's amazing how here NB is the norm. All the kids run around with masks and no hair and the frig is full of shots and other meds. It makes cancer seem almost normal...unlike other places.

Joshua was so happy last night. He turned to me while he was waiting for Santa to come and said "mommy, this is the best Christmas ever!" Then he said, "mommy...thanks for bringing me here to the part!" He is the most thankful kid I know...and I am the most thankful mom.

Tomorrow should be interesting. The reports I hear from people are scary. It could go OK, and it could be very bad. I am terrified and am hoping and praying for the best. He is in good hands and I can only hope it won't be a horrific nightmare for both of us. Please pray for my son tomorrow. We will go the clinic at 8:00 Eastern time. We should be there at least till noon. Joshua will likely have a lot of trauma and a lot of pain. Please pray that he will handle things as easy as possible and that the pain would be able to be managed by the morphine! Thanks for your support in our continued quest for beating this monster.

For His Glory,
Janene

Friday, December 5, 2003 2:21 PM CST

Hello!

It is snowing big time! It looks like we will have more snow than Joshua has ever seen very quickly. We went out once today to pick up a few groceries and got back to stay put. Joshua is content to either stay in our room and watch TV/videos or play downstairs in the basement kid area. He has been wearing his mask pretty well and we just hope and pray he doesn't get sick from someone or something he comes into contact with.

We are going to lay low all weekend and wait til Monday. I have a million questions that I should know by later in the day Monday. The Ronald McDonald house has plenty of Christmas parties for the people who are staying here. The NY Giants will be doing a party, plus many other groups like NY Police, NY Firefighters, businesses etc. There is one just about every night. We ought to be partied out by the time we get home. I hope the treatment Joshua receives will not totally wipe him out so that he will be able to enjoy some of the holiday festivities.

Thanks for checking in with us. We appreciate your prayers and your support especially during this time of separation for our family.

Hugs from New York,
Janene & Joshua

Thursday, December 4, 2003 7:59 PM CST

Hi From New York City!

We made it safe and sound and had a great flight through Corporate Angel Network and Sprint. Craig and Joshua were right...it is the way to fly. Sprint is wonderful! The pilot had a gift for Joshua and they had made him a special box lunch with all kinds of kids snacks and even cut out sandwiches in shapes! It was amazing.

We weren't sure about getting a room tonight at The Ronald McDonald House because there was a mix up. But, on the way to KC this morning, they called and said we had one. I was very thankful, because I wasn't too excited about staying in a hotel for one night.

We will be taking it easy all weekend and will not have to go the the hospital until Monday. I do want to call and get some information about what we should expect Monday. I feel like I am walking off a cliff with no knowledge of what might hit us. I just hope it won't be unbearable for Joshua so he doesn't want to come back.

Thanks so much for checking in with us. We appreciate your prayers on Joshua's behalf and would ask you to lift up Bethany as well. This separation is very difficult for her. Last night as I was putting her to bed, I layed down with her and we sang Christmas carols for a long time. It was kind of our "goodbye time". After we prayed together, she squeezed my hand 3 times which in Bethany language means "I love You". I then squeezed her hand back 2 times which in mommy language means "me too". Then she pulled a new one on me and squeezed my hand 4 times. I said "what does that one mean?" She answered "I love you forever". Yep, you guessed it...I squeezed back "I love you forever too".

I stored that moment in the "treasures" part of my mind and am very grateful for each minute and day I have with my incredible husband and both of my children. I am blessed beyond my wildest imagination and could never ask for more. I pray today will find you recognizing the many treasures all around you that are from God above. He does know how to bless us doesn't He?

In His Hope...For His Glory,
Janene

Wednesday, December 3, 2003 5:10 PM CST

Hi Everyone!

Joshua continues to feel well...Praise the Lord! He has been playing a lot and is really getting excited for Christmas. He seems to be OK going back to New York, and said he would show me around on the Sprint Jet we are flying again!

I have been busy trying to tie up loose ends like Christmas gifts, parties, paperwork, ministry things and so much more. Maybe I'll get some sleep when we get to New York:)

Tonight we start Joshua's shots for his treatment. We haven't done shots for several months and I am not looking forward to that at all.

Well, that's about all I know for now! I will update after we get to New York. Thanks so much for checking in on us and for remembering Joshua in your prayers!

Love,
Janene

Isaiah 25:1
O Lord, you are my God; I will exalt you and praise your name, for in perfect faithfulness you have done marvelous things, things planned long ago.

"Faith builds a bridge across the gulf of death."
-Edward Young

Monday, December 1, 2003 8:12 PM CST

Hi!

Joshua is doing well today! We had an uneventful clinic appointment in KC and did find out that his bone marrow tests came back negative for NB which is more great news.

Joshua and I will leave Thursday for New York. Joshua will begin his 3f8 treatments a week from today. We will be in New York until the 19th. Hopefully we will be able to catch a late flight home that evening.

Thanks again for checking in on us!

For His Glory,
Janene

Psalm 84:10
Better is one day in your courts than a thousand elsewhere; I would rather be a doorkeeper in the house of my God than dwell in the tents of the wicked.

Wednesday, November 26, 2003 3:56 PM CST

Hello!

Just wanted to write a short note to say Joshua is doing well. We went to the clinic yesterday and his blood counts are still rising slowly. His weight went up for the first time since transplant which was a huge milestone. They did the blood test yesterday to determine the functioning level of his immune system. We are still waiting for those results.

We heard today that Joshua has been approved by Sloan Kettering to enter one of their 3F8 protocols. We won't be official until Monday when we hear his bone marrow results. Now, we will wait for word from our insurance company and will likely need to appeal quickly since we need to be in New York for treatment on the 8th.

We hope each of you have a wonderful Thanksgiving! Make time tomorrow to truly celebrate the many blessings God has given you. He has given us so much and deserves all of our thanks and gratitude.

For His Glory,
Janene

Monday, November 24, 2003 11:28 AM CST

Good morning!

We had a good weekend being together as a family. Joshua walked around all weekend saying "we are a family...daddy, mommy, Bethany & Joshua". It was evidently kind of strange for both kids to feel like a family! I hope that changes very soon.

We will go to the clinic tomorrow for a blood check and check up. Today we are hanging out and getting ready for Thanksgiving and our next trip to New York.

We are waiting to hear from New York about Joshua's scans and tests. We hope he is clear from Neuroblastoma, but are preparing for the strong possibility of relapse. It is a tough pill to swallow and we battle fear continually. God is good though, He reminds us constantly that He is in control no matter what. He defeated fear and death through His work on the cross so many years ago. And, in the midst of uncertainty, that work and the person of Christ are both something to celebrate and something to be eternally thankful for!

Happy Thanksgiving Week from the Freerksen's!
For His Glory,
Janene

This evening...
We got the wonderful phone call we have been waiting for. Dr. Kushner called from New York and said Joshua's scans were clean! We still don't have the bone marrow results, but the CT, MIBG and Bone scans all showed no Neuroblastma present! We are planning to start his treatment on the 8th of December. My heart is a bit lighter tonight and as always I thank you for your constant prayers! We love you!

Saturday, November 22, 2003 10:41 PM CST

Hi!

Just a short update to let you know that Craig and Joshua are home safe and sound! They had a good flight with Sprint last night and got to Topeka about midnight.

We had a relaxing day today and didn't get a whole lot accomplished which was fine with us. Joshua is in some pain from the bone marrow aspirations and complained of dizziness and nausea. I hope he will be feeling better in the morning.

Thanks for checking in with us and for your constant prayers. We thank God for you and are so grateful for your encouragement and support!

Much love and gratitude,
Janene

Friday, November 21, 2003 7:57 AM CST

Good Morning Everyone!

Today I'd like to ask everyone to pray especially hard for Joshua and Craig. This is a really difficult day for him. He has to be NPO (without food) pretty much all day and he is doing 3 different set of scans/tests. The CT scans are normal, the MIBG scan lasts over and hour and he has to remain perfectly still. We have never tried to do this one without sedation before. (But the effects of sedatation are worse than trying to keep a kid still for an hour who is hungry) Then we will do the bone marrow aspirations at 1:00. He will be under anesthesia for this process as it is a surgical procedure. Then he will need to wake up quickly and make it to catch the plane and will be home sometime after midnight. So anyways, it will be a tough day and if you have opportunities to lift him up in prayer, we would greatly appreciate it.

Also, we will soon here the results of his scans and are hoping they come back showing no neuroblastoma. We also hope that the doctors at Sloan will allow Joshua to enter the Phase II Antibody trial called 3F8/GMCSF. So, much is going on and we are also still waiting for our insurance to either deny or approve our request for the study. Thanks for your continuous prayers on the behalf of our son! We appreciate them so very much. !

Love,
Janene

Tuesday, November 18, 2003 12:12 AM CST

Hi Everyone!

In about 10 minutes, Joshua will be finished with his final radiation treatment...we hope! From the clinic, Craig and Joshua will then be making a mad dash across Kansas City to the Downtown Airport. They will be flying on the Sprint Corporate Jet directly to New Jersy, where a car service will be waiting to take them to the Ronald McDonald House in Manhattan!

His schedule at Sloan is the following:

Wednesday:

11:00 AM - Injection for Bone Scan
2:00 PM - Bone Scan

Thursday:

2:00 PM - Injection for MIBG Scan

Friday:

8:20 AM - CT Scans of about his entire body
11:00 AM - MIBG Scan - We're hoping to do this scan awake for the first time!!!!!!!!
1:00 PM - Bone Marrow Aspirates (Joshua will be asleep for this since this would be very painful!

Then, when he wakes up, they will make another mad dash for Long Island and fly home with Sprint again...unless, Dr. Kushner decides we can stay and do antibodies next week. Then, Bethany and I will get on the quickest plane we can, to be with the 2 best guys in the entire world for Thanksgiving week in New York.

Thanks for checking in with us. We appreciate your prayers very much and will never begin to express appropriate gratitude. This leg of Joshua's treatment could take anywhere's from 6 months to 2 years...depending on how Joshua responds. And on top of everything else, it is a very painful treatment. Being on the road to New York will be very trying for our family and we are hoping sincerely for the 6 months instead of the 2 years. Thanks again for your prayers. We could never make it without them.

For His Glory,
Janene

PS Craig and Joshua's flight is through Corporate Angel Network. They are a non profit organization that arranges medical transportation for children with serious illnesses with participating corporations. (When companies like Sprint fly an executive to New York, they open up a few seats for a child who needs to travel for treatment) It is an incredible service to families dealing with cancer. Thanks Sprint and Thanks Corporate Angel Network!

Saturday, November 15, 2003 11:16 PM CST

Hello Everyone,

Thanks for checking in on us today! I hope you are have a great weekend! Joshua is doing well. He is finished with 5 days of radiation and has 2 more to do. He enjoys it and has made many friends at the Kansas City Cancer Center.

Craig and Joshua will be flying to New York on Tuesday after his treatments are over. Joshua will have 3 days of scans to determine his eligibility for the 3F8 Antibody trial at Sloan Kettering. They will be taking a Corporate Angel flight and will get to fly on the Sprint Jet! They will no doubt have a great time. Joshua is very excited to go back to New York. He loves it there and would tell you he wants to live at The Ronald McDonald House for good. They will fly home on Friday, with Sprint again, and then we will wait to hear when they want us to come back for the first 2 week session of antibodies.

We are hoping and praying that our insurance will decide to pay for this treatment. They are in the process of looking at the study now. We will likely have to go through several appeals.

We had a great day today! Bethany and Joshua played outside as today was just beautiful. I sat and watched them play and was grateful! May we all recognize the little blessings, and the big ones that are ours because of God's precious gift of His son. Where would I be without the hope and peace He offers?

Grateful in Topeka,
Janene

Thursday, November 13, 2003 10:35 PM CST

Hello Everyone,

We had a decent 4th day of radiation today, except that mom forgot her purse and didn't realize it until sitting at the gas pump on the turnpike. My choice was either turning around and being incredibly late to a very important radiation treatment or scrounging for quarters in the car and getting enough gas to make it to the clinic. That's what we opted for and we made it with very few seconds to spare. Let's hope I don't have any more brain lapses this week:)

We heard from New York today. They are scheduling Joshua for all kinds of scans and tests next week. He will have tests Wednesday, Thursday and Friday. Then we will come home and wait to hear if we are accepted for the antibody trial! We ought to be headed back to New York very soon for the start of treatment. The good news is that we probably have a corporate angel flight for Joshua instead of putting him on a commercial flight. Large corporations sometimes allow kids in cancer treatments to ride along if they are going to a specific city where the treatment is. We will be flying from Kansas City to New York and we'll know tomorrow if it is "for sure". It is free for one thing and Joshua will not be around all those people in his immune compromised position after transplant.

Tonight I had the privilege of attending Christian Challenge again. Many of you know that Craig and I have the incredible opportunity to lead a collegiate ministry at Washburn here in Topeka. Since Joshua was diagnosed, I have been able to participate some, but not nearly as much as I have in the past. So, it was good to be back! One of the students in our group shared a favorite verse of mine in a word of personal testimony during our meeting. Here is Philippians 3:10 from The Amplified Bible:

For my determined purpose is that I may know Him - that I may progressively become more deeply and intimately acquainted with Him, perceiving and recognizing and understanding the wonders of His person more strongly and more clearly. And that I may in that same way come to know the power outflowing from His resurrection which it exerts over believers; and that I may so share His sufferings as to be continually transformed in spirit into His likeness even to His death, in the hope. Phil 3:10

Tonight...may you have a blessed evening and find that your determined purpose is to Know Jesus! He is worthy of all it takes!

Several years ago, Bethany and I were in the car singing with a CD the song "He is worthy, He is worthy"! I stopped and listened and Bethany had misunderstood the words and was singing as loud as she could "He is worth it, He is worth it"

Perhaps she understood it better than I do! He is worth it and for tonight I am very grateful!

For His Glory,
Janene

Wednesday, November 12, 2003 8:20 PM CST

Hello All!

Day #3 of radiation went well today! Joshua got 2 more teddy bears from the clinic and he and Craig went to my sister's house again in between treatments and watched Finding Nemo yet another time. Tomorrow and Friday, I will go with him. By then, we'll be almost done!

We finally heard from Children's Mercy about New York. We are to call in the morning and speak with Dr. Kushner's assistant to schedule our post-tranpslant and pre-antibody scans and tests. As soon as they can get us on the schedule, we'll be flying. It will probably be quicker than I want to think.

Well that's all I know for now. I hope you have a wonderful evening!

Love,
Janene

Tuesday, November 11, 2003 4:17 PM CST

Hi All!

Day #2 of radiation went very well and no problems were encountered. They have teddy bears at the clinic and Joshua seems to end up with a new one each visit...yes 2 today! After the afternoon session, the technicians had Joshua lay the teddy bear on the bed and took him out to the TV screens on the outside. They then proceeded to radiate his teddy bear. Rumor has it that Teddy Bear #5 is now cancer free! They go to much work to make it a fun experience for the children. Joshua had a lot of fun and was in a great mood when he got home. Craig said by the end of today he acted like he owned the place and the hearts of all who work there. So 2 days down and 5 to go. I get the feeling that Joshua will be sad when he is done. Go figure...

In His Hope,
Janene

Monday, November 10, 2003 4:54 PM CST

Hello Everyone,

Joshua and I got home from Kansas City at about 4:00 PM this afternoon. He had his first day of radiation treatments which consisted of 2 separate appointments with 5 hours in between.

The first one was horrendous. Joshua was just sure that they were going to tatoo his again. He did not trust them in the least after they did that to him during the consultation without explaining it to him first. No matter how many times we promised him that they wouldn't hurt him, he still went pretty much insane! He kept screaming over and over again "where is it...no pens...where is it"! (They used pens to mark where they would stick him for the tatoo)

But anyways, after way too long, we finally got that session done and he was happy. Then I could explain about 7 days and 2 times a day. By the time 2:30 rolled around, he wasn't excited about doing it, but he knew it would be painless so he was quite willing to do the "required".

The radiation room was set up pretty much like a CT scan room. He had a bed to lay on with a formed bed on top of it. They had made his formed bed by laying him in a bean bag type bed and sucking the air out. When they were done, they had a hard bed which fit his body shape so that he can lay in it and be still.

After he was in the bed, they lined him up to 4 lasers which had to pass through his tatoos...if that makes any sense. They they told him not to move and we all went out to the station right outside the room. I could see him on a tv screen and talk to him by pushing a button. He did very well when we left. The machine that gives the radiation shoots him from the top and bottom. It shoots a radius that includes the areas where cancer was removed during his surgery and the 3 vertebrae that lit up initially on his first bone scan. So, he gets one dose of radiation on the front and one on the back twice a day. I think the total time is around 1 minute.

The staff at The Kansas City Cancer Center is very nice. The nurses are very caring and Joshua hugged them as he left. He will likely go back tomorrow and enjoy himself.

Let me know if you have any questions, because this treatment is a hard one to explain. I am glad the first day is over and am confident that it should go well.

That's it for now. Thanks for checking in with us and for your continued prayers.

Much Love and Gratitude,
Janene

Saturday, November 8, 2003 8:03 AM CST

Good Morning!

Happy Weekend to you all! I hope you have a wonderful one.

Joshua continues to do well. We spent all afternoon at the clinic at Children's Mercy yesterday. His counts continue to rise slowly which is a good sign. He will be starting radiation treatments on Monday for the next 7 business days. We will have a treatment at 8:30 AM and 1:30 PM for each of those days. The treatments are very short and painless I believe. The only problem will be getting Joshua to believe that when he sees he is going back to the "tatoo place".

It also appears that very soon after the completion of radiation, we will be traveling to New York City for the start of our antibody treatments. We will hopefully hear a date on Monday or very soon after. We will have numerous scans and tests before starting antibodies and so we'll probably be in New York for about 3 weeks. We're hoping to be home for Christmas and that the timing of round 1 and 2 will make that possible. It is looking very much like we will be in New York for Thanksgiving. I guess we will know soon.

As I was sitting in the clinic yesterday, I realized that we are now entering the hardest part of treatment for Joshua. Any time from now on, this monster called Neuroblastoma could re-appear in my Joshua! The majority of children like Joshua will relapse and it can happen any time after transplant! Early on, we were doing chemo every 3 weeks to prevent the monster from coming back. Now, we are doing a lot of waiting. Chemo is a safe phase, but moving to this phase isn't! Our tranpslant doctor wanted us to do radiation treatment here before antibodies in New York because their last NB patient went for antibodies first and then radiation and relapsed at 3 months. I wish we could rest and feel somewhat confident of remission, but that is clearly not the case for many years.

...and God said once again, "this is the spot I want you in...I want you relying on me every minute for all your strength. Joshua is in my hands, and you can trust my hands!

I hate living with Neuroblastoma, but I love living my life with a clear focus on eternal matters. The trivial things have no weight in my life. In fact, sometimes it's hard to find something that really matters, because so little really does. My mom's parents used to have a wall hanging that said something like "Only one life will soon be past...Only what's done for Christ will last!" I guess that makes a lot of sense to me right now.

Also, neuroblastoma brings heaven so much closer. When you live each day knowing that at any time Heaven may call for your son, it brings the reality of eternity in clear focus. I guess that's how I need to live each day. The following is a song written by Steve and Becky Smith who also have a child fighting Neuroblastoma. I love their perspective that says..."We wouldn't keep you here, if Heaven's calling!"

When Heaven's Calling

We have seen you face the fire,
yet your eyes still shine with laughter
We've watched you walk through pain
we can't comprehend
Yet every day you look away to the hope
of what comes after
Then we see you smile,
'cause this is not the end.

Heaven's calling you today,
so go ahead, go fly away
Leave behind your pain,
oh leave behind your tears
It's time to dance, it's time to sing,
and rise on resurrection wings
Though we cry for you
we'd never hold you here, when heaven's calling.

What a light behind your eyes,
as your heart beholds His splendor
Your suffering falls away as you see His face
You've been strong for far too long,
what a joy now to surrender
Go home and rest, go home to His embrace.

Don't look behind at our weeping
Look up, for the angels are near
We know you'll be safe in their keeping
'Till that moment when we will hear

Heaven calling us one day,
to come to you, to fly away
We'll leave behind our pain,
we'll leave behind these tears
We will dance with you and sing,
we'll rise on resurrection wings
It's so hard to wait, so hard to stay down here,
when heaven's calling.

--- the music of Steve and Becky Smith

That's it for today!
For His Glory,
Janene

Thursday, November 6, 2003 9:41 AM CST

Good Morning!

Joshua continues to do well and is enjoying his week at home free from doctors and clinics. We will be going to KC tomorrow for our clinic visit and will find out if his counts are rising so that radiation can start Monday!

Grandma Della came yesterday for Bethany's concert at school and stayed with both kids last night so Craig and I could escape for a few hours. It was a good evening for all I believe!

I'll write more tomorrow when I have some news! Until then, have a great day. Don't let anything or anyone keep you from making the most of it!

With Love,
Janene

Tuesday, November 4, 2003 10:03 AM CST

Good Morning!

Today was going to be our first day of radiation treatments! However, we learned yesterday that Joshua's counts are not as high as they need to be! So...we wait until next Monday and hope he is Up...Up...Up..! I don't mind having a week without treatment, except it puts off our treatment in New York which we are trying desperately to finalize. So, I think we'll enjoy being home this week and hope he doesn't get sick!

Joshua is feeling good and is playing with his Thomas trains this morning and his indoor golf clubs. He slept well yesterday and wanted to eat pringles, candy and pop instead of all of the "other...more healthier" suggestions mom tried so valiantly to bring forth! We are searching for our "new" balance between eating healthy and eating enough to not go back on the TPN.

So, we're waiting on the radiation doctors to call and schedule our new appt. for next week. And, we also contine to wait on word from New York and when we will go for our first antibody treatments.

That's about it for now. Thanks for checking in with us! Have a great day:)

For His Glory,
Janene

Joshua 1:6-9
Be strong and courageous, because you will lead these people to inherit the land I swore to their forefathers to give them. Be strong and very courageous. Be careful to obey all the law my servant Moses gave you; do not turn from it to the right or to the left, that you may be successful wherever you go. Do not let this Book of the Law depart from your mouth; meditate on it day and night, so that you may be careful to do everyting written in it. Then you will be prosperous and successful. Have I not commanded you? Be strong and courageous. Do not be terrified; your God will be with you wherever you go.

Sunday, November 2, 2003 8:16 PM CST

Hello All!

I hope you all had a wonderful weekend and had a chance to relax and rest at least a little! We had a good weekend and were here at home most of the time.

Joshua is feeling well and back to eating about as he was. He is sleeping well and playing hard. His new thing is to ask us for our smiles! He'll say, "Mommy, show me your smile"...and when I do he'll say "mommy, that's a great smile!" He seems to have a deep desire for us to be happy. All is well for him if we are happy. He is such a beautiful example of love to me! It's amazing to see a child so concerned about those around him. He teaches me every day about selfless love! Yes, Joshua...you are my hero!

Tomorrow we will have lab work done here in town! Then hopefully on Tuesday, we will begin his radiation treatments. I am anxious to be done with that part because Joshua will not like driving to Kansas City every day without a break. He is a homebody like his mom.

Again, I hope all is well in your hearts and lives! May we all learn to give our lives unreservedly to our Sovereign God who holds our next breath in His hand!

Thanks for checking in...We love you lots!
Janene for all 4 Freerksen's

Saturday, November 1, 2003 11:02 AM CST

Hello All!

Joshua continues to do well! His visit to the clinic at Children's Mercy yesterday was full of waiting! The lab must of lost his blood for a while...go figure. Anyways, his counts dropped some, but they aren't overly concerned about it yet. Hopefully by Monday, we will be on the rise for good. His liver enzymes dropped somewhat which is a good thing. We won't be taking the acyclovir until Monday with hopes of his liver functions being normal by then.

The doctors all seem to be in agreement and feel that radiation on his neck is not necessary. I am still trying to figure out what I think about the whole thing. I know I would be more comfortable with them doing it, but I also don't claim to know more than them...so I'll probably go along with their thoughts.

Anyways, that's about all for now. Have a great November weekend. It's amazing that November is here already, and it's a great reminder to me to be thankful for all He has given me. I pray you are filled with thankfulness for all He has done for you and through you today! Thanks again for checking in on us!

For His Glory,
Janene

I John 2:6
Whoever claims to live in him must walk as Jesus did.

I John 2:17
The world and its desires pass away, but the man who does the will of God lives forever.

Friday, October 31, 2003 9:16 AM CST

Good Morning!

We had another good night. Joshua has been without his morphine during the days and seems to be free of pain. He still is on nausea medicine and may continue for a while.

Today we have another clinic appt. Craig will take Joshua again today since I have Bethany's school Halloween party today. Being a room mom for one kid and fighting cancer with the other sometimes doesn't mix too well.

We hope Joshua's liver enzymes are down and that his other counts continue to rise. Otherwise we don't have much new to report.

I am in the process of doing some research on different radiation techniques. Since Joshua is set to start that on Tuesday, I don't have much time. I'm hoping to get the doctor to radiate the lymph nodes in Joshua's neck and to use stronger than a grey scale radiation. So anyways, I will probably spend my day learning about that and doing a Halloween party for my daughter.

Better go...Hope you have a wonderful day. Use it up on things that will matter for eternity!

For His Glory,
Janene

Thursday, October 30, 2003 8:07 AM CST

Good Morning!

Joshua slept all night without waking, but woke up a bit miserable. I think we still need constant nausea medicine. I really expected that to be done by now.

Craig and Joshua had a rough day yesterday. They had the clinic appt. and found out that Joshua's liver function is still too high. They will be temporarily stopping a medicine we are giving him called Acyclovir to see if the liver enzymes drop any. This is the medicine that prevents him from getting shingles. Since the varicella virus is in him (after having chicken pox) he would get shingles now when he has no immune system without this medicine. So, I hope they can start it again soon if they need to.

Then came the radiation consultation. They talked first and then came the bad stuff. First they formed a hard bed in his body's shape that he will receive his treatments in (to keep him from moving) Then my son was given 5 tatoos. (Yes, the real thing with needles and all!) They had to make 5 x's at different places on his body that will be permanent so that they can tell he is positioned correctly before beginning the radiation. So Craig and several others had to hold him down for 5 sticks as they did the tatoos. Joshua was not a happy camper. Then he slept all the way home and ended up staying up late watching "Bible Man". I'm glad he doesn't have to go to see any doctor today! But, tomorrow we go back to clinic. It's times like these where it would be real nice to live in KC.

That's about all the news I know. We're still hoping to find out when New York wants us very soon!

Have a great day enjoying the many blessings God has surrounded you with!

With Hope,
Janene

Wednesday, October 29, 2003 11:24 AM CST

Hello Everyone,

Just wanted to let you all know that Joshua had a pretty good night! He ate a little bit yesterday and today reaffirmed his love for pringles. We're glad to see him come back a little at a time.

Craig and Joshua are on the way to Kansas City right now. They have his first transplant follow up appt. and a radiation consultation. Craig will learn much about what's coming next today. I stayed home today and will take him next time. (Either scans or first radiation treatment)

Soon, we'll know much more about what Joshua's future treatments will be. We figure our first trip to New York for 3f8 treatment will be right around Thanksgiving. With our current luck, we figure we'll probably spend Thanksgiving and Christmas in New York City. We're expecting it at this point so that our hopes aren't dashed.

I'll let you know more when we get the word. Honestly, this is a very difficult time for us! We thought chemo was hard, but as we move forward during these times, it seems to get increasingly difficult. The realization that this battle will be with us as long as Joshua is with us is very discouraging at times. We are very, very tired and are looking for a light at the end of the tunnel that just isn't there!

Even though at times we're only holding on by a thread, I try to focus on the 2 things that are unchanging in my life. First...God loves us and Second...He's walking with us every step of the way. I guess those are the two threads we're holding on to.

Thanks again for all your prayers on behalf of our family. We appreciate you all checking in on us!

Love,
Janene

Tuesday, October 28, 2003 11:33 AM CST

Hello Everyone,

Well, we got home around 7:15 last night. It took forever to get out of the hospital. Joshua ended up throwing up several times and really had a lousy day. I'm not sure what was up except that he is still recovering from a very difficult experience. I think it will just take time. He ate basicly nothing all day yesterday after doing very well the day before. We continue to hope and pray he will begin to eat quickly and that his throat will finish healing after transplant.

When we got home, our home nurse spent the rest of the evening with us getting us comfortable with administering the IV Nutrition Joshua receives 12 hours a night. It was quite a process and the real test will be to see if we can get it alone tonight. Each new thing is difficult for a while, but then seems almost easy after doing it enough.

Today we are home all day and then tomorrow we go back for our first clinic appt. as well as our radiation consultation. We should have many questions answered after tomorrow.

I'll write more then. Thanks for checking in with us. We appreciate your constant prayers and support.

Love from Topeka,
Janene

Monday, October 27, 2003 11:13 AM CST

Good Morning!

...and yes, it is a GREAT morning! We are coming home today! The nurses just came in and said to start packing. We won't get out quickly because we are waiting for a packed red blood cell tranfusion. If all goes well, we ought to be done and out between 3 and 4:00.

I'll write more later, but I just wanted to share the great news.

PS A note to anyone who wants to come to the house and see Joshua...Please call before you come! We have some VERY strict guidelines that we must follow to keep Joshua safe during this time where his entire immune system is compromised. The following is a list of some of the things we must keep him away from to avoid hospitalization and probably ICU!

1. Anyone who is coughing or has a cold or is sick in any way.
2. Anyone who has been around someone who is sick.
3. Anyone who has had the nasal mist flu immunization
4. Anyone who has had the chicken pox vaccine or the MMR Vaccine recently...(also maybe parents of children who have recently had these vaccines)
5. Anyone who has been recently exposed to Chicken Pox.

We don't mean to be too cautious, but they have told us that his life depends on it. So, we'll be ultra paranoid for a while.

That's it for now. I need to go PACK FOR HOME!

Much Love from room 4421 (hopefully for the last time)
Janene

Sunday, October 26, 2003 4:24 PM CST

Hello,

Joshua continues to do well. HE IS EATING!!!!!!!!!!!!! It has been about 3 weeks since he has taken anything solid by mouth and finally he seems to be turning the corner.

Joshua's blood counts are falling now that he is off the neupagen. His ANC is still high enough to come home, but today it still fell a little ways. If he falls again tomorrow, we will not be released. If it rises, we can come home...I think! So, we're hoping the lab work tomorrow morning will show a rising ANC.

They have switched Joshua to oral pain medication. He is back on his morphine pills he has taken so much since March. He actually likes taking those pills because they are tiny and blue. I think by now, they are almost comforting to him...I know they are to us. It's amazing how much mental relief pain medication provides parents. It is such a relief to know that your child is free from pain. One of my friends online whose child also has neuroblastoma said recently "I fear uncontrollable pain more than death in my child". That is true in this world called Neuroblastoma.

Thanks again for checking in on us! My verse for today is

II Peter 1: 16. Peter writes, "We did not follow cleverly invented stories when we told you about the power and coming of our Lord Jesus Christ, but we were eyewitnesses of his majesty."

A Grateful Eyewitness,
Janene

Saturday, October 25, 2003 10:52 AM CDT

Good Morning!

I don't have a whole lot new to report to you this morning. Joshua had a fairly good night. I noticed him in pain 3 times throughout the night and was grateful we still have the pain pca pump. I'm not sure where his pain is, but the meds did help.

He is drinking more...but only water! He cries at the thought of anything else. Last night he ate a few bites of some different things with much coaxing. He says he is hungry, but cries at the thought of having to put anything solid in his mouth. He chewed up an m&m last night and spit it out and said he didn't like it!

The plan for the weekend is to hang out and try and eat and drink more slowly without throwing up too much. We'll also finish the IV pain meds. We are hoping his pain continues to lessen so we don't have to do the scope on Monday.

Thanks so much for checking in on us! Have a great Fall weekend.

For His Glory,
Janene

Friday, October 24, 2003 9:04 AM CDT

Good Morning!

We had another good night! Joshua slept from about 11:00 - 9:00 AM. I believe he threw up just once yesterday so maybe we're still making progress.

He drank a little more water yesterday, but got nauseated when I suggested anything else to drink. In the afternoon, he said "mommy, I'm hungry" so we ordered some food and when it came he wanted nothing to do with it. I managed to get him to try a bite of about everything and so I guess we're making a little progress. It's just really, really slow!

Today, they should be doing a sonogram of his abdomen to check on his liver and spleen. They want to rule out a blood clot causing his enlarged spleen.

I'm once again hearing "Mommy do you know what....I love you!" several times a day. For those of you who don't know Joshua, those words along with a killer smile, are his favorite words. He uses them often and teaches us how to love each other more purely each and every day!

Thanks for checking in with us! We're still hoping to come home Monday!

For His Glory,
Janene & Joshua from room 4421!

Evening:
Hello Again!
Just wanted to let you all know that we had our sonogram and he does not have a blood clot making his spleen enlarged. But, we still don't know why it is larger than it should be. The will keep watching it.

The other big thing is that Joshua still has pain in his chest along his esophagus (sp?) Dr. Gilman says Joshua will have to have a surgical scope put down his throat to check it out on Monday if he doesn't get better. The procedure would be done in the O.R. with sedation.

Please pray that Joshua's throat would heal and that he would be free of pain this weekend. The last thing I want to subject him to after all this is another "procedure".

We continue to ween off the pain meds and seems to be doing OK. Hopefully his throat will be OK by Monday and we can GO HOME!

Thanks for your prayers. Have a great weekend!

Thursday, October 23, 2003 12:41 AM CDT

Good Morning!

Hello from room 4421 again! I came up to the hospital about 9:00 PM last night and was so happy to see Joshua again. He had a good day with Grandpa and Grandma and asked for them to come back and play today. He had a good day with a few bouts of throwing up!

He slept very well last night. We both slept from 10:30 - 8:00 AM with just a few times of getting up! The doctor was in this morning and has now said we are looking at Monday as a going home day. Joshua is having pain in his chest along his esophogeus (sp.?) when he swallows and so we are very slowly lowering his pain pump meds. He has to be totally off the pump before coming home.

He continues to take a few sips of water, but does not ask for anything on his own. He took a bite of jello today but was in obvious pain as he swallowed. We hope things will heal quickly and he can start swallowing pain free.

If he is still having pain by Monday, they will probably look down his throat with a scope to see if they can find the problem.

Joshua is in good spirits today and I told Craig on the phone that his "spirit" is back! He has a particular way of smiling at me when he is feeling well that tells me he is doing better. I'm starting to see that, so we will soon be home I think...

Thanks for checking in with us and for keeping Joshua in your prayers. It means a great deal to us and we are grateful!

For His Glory,
Janene

Wednesday, October 22, 2003 8:42 AM CDT

Good Morning!

Joshua is still sleeping this morning according to Craig! They didn't get to sleep till 1:00 AM because he had slept from 3:00 - 8:00 PM yesterday after getting sick! Craig said he finally felt better late last night and they figured out he had not received a dose of anti-nausea medicine.

The doctors aren't saying much about going home, but we think they're still shooting for Friday. Today, Grandpa and Grandma will be staying with Joshua for most of the day. Craig and I will be in Topeka taking care of some things and then I will go up tonight to be with Joshua. Today we will be getting flu shots and saying goodbye to Sam. Sam, our cat, will be going back to the CAT Association at least for a while...just one of the things we need to do while Joshua's immune system is compromised.

For those of you who will want to see Joshua when he is home...we found out that the flu vaccine is OK, but anyone who get's the nasal spray form of the influenza vaccine can't be around him for several weeks. The reason is that the nasal spray is "live virus". Joshua would pick up influenza just like that and be in ICU as quick as a bat! The same goes for children who have gotten any live immunizations in the past few weeks.

So anyways, we will likely be asking anyone and everyone who comes to the house whether they have had the nasal spray etc. We are trying to keep him well during this compromised time.

Many of you are asking how Bethany is doing? Keep praying for her. Today she has to say goodbye to Sam who has been her best buddy for 8 years. She is a trooper, but she is very tired of all this, much like her mom and dad. We just keep taking one step at a time because we don't really have any other options.

We found out yesterday that we will be continuing treatment for Joshua in New York City once he is finished with radiation in KC. We will be involved in a Phase II Antibody study at Memorial Sloan Kettering Cancer Center. Joshua is ineligible for the Phase III Antibody study being done by COG, so we are left with this option.

We could stop after radiation and accutane, but the relapse rate is so high that we feel strongly we must do anything and everything within our capabilities now to prevent relapse. Relapsed Neuroblastoma is uncurable at this point and about 7 out of 10 children in Joshua's shoes will relapse! The 3f8 study at Sloan has been running for 15 years. The goal of the study is to teach the body's own immune system to fight Neuroblastoma! It is confusing, but incredibly amazing to learn about. I'll write more later for those of you who want to learn about 3f8's.

I will sign off for now. Thanks for checking in on us and for keeping Joshua in your prayers. I will close with

I Peter 4:1,2
Therefore, since Christ suffered in his body, arm yourselves also with the same attitude, because he who has suffered in his body is done with sin. As a result, he does not live the rest of his earthly life for evil human desires, but rather for the will of God.

For His Glory,
Janene

Tuesday, October 21, 2003 9:11 AM CDT

Good Morning!

Craig reports that Joshua had an OK night last night. He slept pretty much all night with a little nausea later in the evening.

His counts continue to rise. He will need a platelet transfusion today, but his hemoglobin is rising on it's own.

Still no fever...Yea!

Joshua has been playing with a new spiderman gift from the Goodyear Bible Study! Evidently, it's our new "toy of choice" for a while!

I'll write more later...Thanks for checking in with us.

Love,
Janene

Monday, October 20, 2003 10:59 AM CDT

Good morning!

Craig reports that Joshua slept very well last night! He slept 8 PM - 8 AM while waking up a few times in the middle!

Joshua's counts continue to rise. Today is the first day he will not need a transfusion. That is a good sign.

We're still waiting to find out what might be going on with his enlarged liver and spleen. After the doctors are in today, I will write and let you know if we're doing more scans or other tests.

Craig will be trying to encourage Joshua to drink today and maybe take a few bites. They will be decreasing the pain meds more today and have already cut out the antibiotics. It will be a good sign if Joshua doesn't spike a fever.

I'll write more later. Thanks so much for checking in on us!

Love,
Janene

4:30 PM
The doctor isn't too worried about Joshua's liver and spleen. He thinks it may be scar tissue from his recent surgery. Of course, if he would suddenly spike a fever, they would look into it more. (That's good news:))

Joshua's white count was officially 3.2 today. His hemoglobin is rising on it's own, and the platelets are holding their own, although I suspect a transfusion tomorrow. The doctor said Joshua will probably be released Thursday or Friday.

He also told us that we will be home a week and will then come back in for 7 days of radiation treatments. We're still gathering info. on this and will write more soon about what is to come.

Thanks again for checking in with us!

Sunday, October 19, 2003 8:52 AM CDT

Good Morning!

Joshua had a short night and I am totally exhausted! He just couldn't go to sleep, and finally after getting sick aroudn 2:00 AM could get to sleep. Ugh!

His counts continue to rise. His white count is 2.1 and his ANC is 1323 which means they will be weening him off his antibiotics and pain meds so he can go home. How soon that will be is the question!

Joshua is in good spirits this morning and is watching Bible Man once again. He is pretty cute doing the "Full Armor Sequence" with Bible Man.

I am going to go take a shower and will write more later. Thanks so much for checking in on us! We love you and appreciate your prayers!

For His Glory,
Janene

1:00 PM
The doctor was just in and said Joshua was doing well. They are stopping the antibiotics today and will see how he does. He is ordering a liver test again because Joshua's liver and spleen are once again enlarged. (Isn't that how this whole thing started??) That could mean infection and the blood test should let them know.

Joshua still has been fever free and the mucusitis is slowly subsiding. Please pray that he would stay infection free as he finishes out these transplant days.

As to the future when Joshua gets home. We are learning about the many dangers that await him. The following is a short summary of the worries after transplant:

Even though Joshua's counts are rising, after this type of transplant, he is still severely immune compromised. That means, he could be hospitalized for the slightest illness because his immune system will still not be able to fight off things as we can. His baby immunizations are ineffective now because his bone marrow was killed during transplant. He will need to be re-immunized in about 6 months or so. But meanwhile, if he is in contact with a child who has recently had live immunizations or an adult or child who has had the nasal spray to prevent influenza, he will probably end up in the hospital with a life threatening situation. Chicken pox is is perhaps the worst threat after transplant...and the list goes on.

I'll write more later...Craig will be here soon for us to tag team early. I am not feeling well and we think I should be at home for a while!

Thanks again for checking in on us!

Saturday, October 18, 2003 7:57 AM CDT

Good morning from 4421! I hope you are having a wonderful weekend! Our counts this morning continue to rise. I am happy to report a .9 white blood cell count this morning which will likely make a huge jump by tomorrow if Joshua follows his normal pattern.

His platelets fell again to 14,000. So, you guessed it...another transfusion. Everything else looks great!

Joshua slept about the same. He wasn't up constantly spitting, but he was scratching last night and he would scratch so hard his oxygen monitor kept coming off. Then I would awaken to the wonderful sound of the oxygen alarm going off. I hate trying to sleep in a hospital. So all in all, he threw up once in the middle of the night, but he actually slept through most of the alarms. That's alright and we'll take it gladly next to some of the things we could be facing about now.

Oh yes, one more good thing is that we are fever free for 48 hours now! We have free roam to the play room, but still can't leave the transplant unit!

This morning, I Peter 5:10,11 are on my mind. Peter writes "And the God of all grace, who called you to his eternal glory in Christ, after you have sufferred a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever. Amen.

Father, God...Thank you for your restoration! Make us strong, firm and steadfast in our pursuit of You!

So Your Glory Will Be Known,
Janene

8:45 PM
Hello Again!
Joshua had a fairly good day today. We managed to take a few "baby sips" with much coaxing and bargaining. As soon as he thinks about putting anything into his mouth, he feels like he's going to throw up!

He's thrown up 3 times today and is still spitting out those nasty balls of mucous and blood!

He slept for several hours late this afternoon, so it may be 11:00 before we go to sleep tonight.

He has been free from pain as far as I can see today. They are starting the process of weening him off the pca pain pump.

It's clear that eating and drinking again will be our major challenge after this experience. Please pray that Joshua's nausea and mucusitis would subside and that he would have the courage to start trying things by mouth. He is simply terrified to eat or drink because of the pain of the last 2 weeks. It may be a slower process than I expected. We'll probably go home on the TPN Nutrition (Line feeding) for the night hours.

Anyways, it has been a fairly relaxing day here in 4421 today. I'm not claiming hospital insanity yet today, but by tomorrow, I will be ready and waiting for Craig to come. We will tag team on Monday morning after he gets Bethany on the bus.

Goodnight, and thanks so much for checking in on us!

Love,
Janene & Joshua

Friday, October 17, 2003 7:35 AM CDT

Good Morning!

Joshua's white count is .5 this morning! Everything is on the rise and he actually has a ANC of .1! Joshua's night started a bit rough with a lot of spitting etc. but turned out better. He slept better and for longer periods than he has been doing. I think the mucusitis is subsiding FINALLY!
I hope to get him to swallow something today! He is scared to death to put anything in his mouth due to the pain. But still when I ask him if he has pain, his response is "No mommy, I'm good". The nurses are learning not to ask him if he is in pain and to look at me!

Joshua barely avoided a fever yesterday. Last night it went up to 37.9 and 38.0 is their magic number here. So from the doctors perspective...No fever for 24 hours! That is way cool!

Craig is with our college students on a Mission Service Trip to a community in St. Louis this weekend! They left yesterday morning and will return Sunday! Please pray that God will be able to use this group to accomplish His purposes in St. Louis this weekend! I am excited to hear about the results!

Lastly, please pray that I continue to stay well until Craig gets back home! I am popping vitamin C pills trying to keep this cold from coming on strong! I would appreciate your prayers since Joshua needs mom or dad up here still!

Now unto Him who is able to do immeasurably more than all we could ever ask for or imagine. To Him be glory in the church forever! Eph 3:20-21

For His Glory,
Janene

3:20 PM
Hello Again,
Joshua got a visit from Grandpa and Grandma and Bethany today! They made him happy and he was sad to see them go home again!

Joshua continues to do OK. He is playing with his Tonka Town Trucks quite a bit which is good to see. He lines the trucks up in a row so he can "look at their smiles". For those of you who don't know Tonka Town...The trucks have faces and names.

We're still fever free and the true test will be tonight. Hopefully the fevers are gone for good. The rash is aging they say. It looks awful and is dark brown, but they say that's what it is supposed to do.

We got platelets again with no reaction. I'm sure they won't let us go home until his platelets are somewhat stable. They are still crashing every day! Joshua took his pill with water today and then wanted to take another swallow. That was it, but it's a good sign. We'll get food in the guy yet!

That's about it for now! I do want to let you know that our little friend Justin who was 2 years old with Neuroblastoma went to Heaven this morning! He was diagnosed just a few months before Joshua and is now in the arms of Jesus! Talk about a perspective getter! Please pray for his parents as they have now lost their only child. Their loss is huge and their grief is substantial! Thanks for your prayers on their behalf!

Love,
Janene

9:30 PM
Just wanted to write a short note to say how thankful I am. There are 4 children right now here on the Transplant Unit at Children's Mercy. Joshua is the only one well enough to leave his room. I spoke with a family member of the little girl who had her transplant the day after Joshua did. The family member told me that this little girl had been running between 106-108 degree temp. for 3 days. She has some type of blood infection and is pretty sick. With that in mind...I'm sorry for griping about nothing! Joshua has done well and hasn't had major difficulties all through his treatment. And for that...tonight I thank the Sustainer of Life for his loving mercy on Joshua and our entire family!

With Gratitude and a Humble Thank you,
Janene

Thursday, October 16, 2003 7:47 AM CDT

Good morning on Day 8!

Joshua had an OK night. He was up spitting every 45 minutes or so and would then go back to sleep. He seems very tired to me after all this.

Late last night, Joshua had some good hours. We played cars in bed and even on the floor some and stayed up til 11:30 PM. He was talking and playing and said he wasn't tired at all! So, mom said...let's play! That was fun.

His labs continue to fall. He will need platelets again today and probably red blood cells. Please pray that Joshua would not have a reaction to the platelets again today and that his little stem cells would work quickly. This waiting game is tough! And as the waiting gets tougher, God reminds me that this place where I'm at is the only place in the whole world that would cause me to rely totally on Him while relinquishing any and all control that I might wish I had in this situation. It's a crazy ride!

Well, the nurse was just in and the day has started. It looks like a beautiful day outside. Enjoy it...for each day is a miracle! Don't let it slip by!

That His Glory May Be Shown,
Janene

11:15 AM
Joshua is getting his platelets and is sleeping with no apparent reactions! But, the best news that I have is that Joshua's lab reports show a .2 white blood cell count this morning. That is what I hope will be the first step of a steady climb. This is the first sign that I have seen that may indicate the stem cells are in the process of engrafting. I am cautiously optimistic at this point and know the doctors probably won't get too excited until the white blood count rises again. Keep praying will you! Maybe Joshua is about done with the worst of it! That would be spectacular and amazing and incredible and just about every other good word I can think of:)

Better go for now!
Hoping for .3 in the morning,
Janene

2:30 PM
I am very pleased to announce that Joshua has ENGRAFTED! The doctors say he looks great and that the stem cells are starting to produce blood products. His white count is .2 and the rest should follow very soon. Dr. Gilman even hinted that Joshua might get out as early as next week (early to mid-week)

So as you can imagine, I am a happy mom this afternoon! God is Good...

Wednesday, October 15, 2003 1:19 PM CDT

Hello From Room 4421!

I made it here to see Joshua about 11:15 this morning. Things got pretty hairy because he got platelets again and had a nasty reaction again. He was very sick and threw up about non stop. His heart rate skyrocketed and his oxygen level fell. Finally, he's resting comfortably (whatever that means)

Joshua's rash has gotten much worse. They now think it is non medicine related, but I'm personally not so sure. The dermatologists have been in and are thinking about doing a skin biopsy tomorrow if it's not significantly better. I sure hope not because that sounds awful.

His pain is increasing and his mucusitis is awful. When he talks, it sounds like he has his mouth full of water or something...it's just all that junk that is coming out a little bit at a time. One of the PA's told me that day 7-10 are the worst days. My heart just sank because I had heard day 2-7 were the worst. I can barely stand watching him in this torment! His face looks like a chipmunk because his mouth is so swollen. It is just truly insane! Now I understand why after people have stem cell transplants, they tear up when they talk about it. The memories must be horrific!

My heart is so discouraged. I am longing for some good news which would show that we are on the way up.

While driving up to KC, God reminded me that the only way we ever will grow in our likeness of Him is through the refinement of The Potter! The purpose He has called me to is great, and I must be clay in His purposeful hands. How tough is that? Father God, make me faithful to that end!

He also reminded me that there are so few things that really matter in this life. My hours and days are futile unless I am doing the things that will matter for eternity! Yes, being a mom is one of those things, but still so many of things that occupy the minutes of my life do not matter! That has got to change!

I will say goodbye for now! Joshua is trying to sleep and I am going to sit a while and watch my gift!

With Gratitude,
Janene

PS I haven't seen this much hair on Joshua since April when he lost his. It's growing back quite dark. If we don't lose it from this chemo soon, we will lose it again during radiation. Joshua says he doesn't want hair again so we'll see!

Tuesday, October 14, 2003 8:26 AM CDT

Hello Everyone,

Craig says last night Joshua had an OK night! By OK, he means, they were up every hour spitting and/or going to the bathroom. I think they are both exhausted!

Joshua's mucusitis is still causing the thick secretions down his throat and he wakes up needing to spit so he can breathe. The throwing up seems to have stopped somewhat, perhaps from all the platelets stopping his bleeding. His diarrea seems to be getting better as well, but will probably not stop until he can eat some solids again. His throat is intestinal tract is still too painful to swallow. He needs his stem cells to engraft so that the healing process can begin!

Tomorrow we tag team. Craig will come home and I will stay with Joshua through the weekend. I am very anxious to see him and have seldom spent this long away from him before. Bethany and I have had a good time together. This time has been difficult for her as she also is part of this tag team effort.

Psalm 20:7 is such an awesome verse! It says "Some trust in chariots and some in horses, but we trust in the name of the Lord our God."

Father God, I do trust in your name alone this morning! You are the only one worthy of that trust and I praise you that I can trust you with the life of my child! I do not know the outcome, but I trust in your Holy name!

That His Glory May Be Known,
Janene

This afternoon:

Joshua is about the same. Craig says they increased his pain meds on the pump because he has more throat pain than before. Evidently it was extremely difficult to swallow the pill this morning. He ended up throwing up after that, but still isn't doing that as much as he had been. His fever continues to jump up and down and his rash on his back refuses to go away. Today a dermatolgoist is coming to check it out! They know it's a reaction to the medication, but can't figure out which one or how to get rid of it. He's learning to live with the itches I believe.

Grandpa and Grandma are there now visiting and Joshua is sleeping. We pray his nights continue to get better and that his stem cells engraft quickly.

Thanks for checking in on us!
Janene

Monday, October 13, 2003 9:01 AM CDT

Good Morning and a Happy Monday to you!

Craig reports that Joshua had a rougher night again last night! Every evening and morning, he has to have some liquid anti-fungal medicine squirted up his nose. It's truly nasty stuff and usually makes him throw up because it then drains down his throat and has a horrible taste. Well anyways, after that medicine last night, Joshua got a nose bleed that still hasn't stopped. It isn't coming out the front, but there is still fresh blood draining down his throat. He has had 2 platelet transfusions in the last day and will have another this morning to try and combat the bleeding. Craig will be asking whether we can change to the IV form of the medication since the bleeding has been a big problem.

If it hadn't been for that, I think the night would have been OK, but that's just a guess. Joshua continues to have a low grade fever that jumps up and falls back down. Whenever it gets to 38, they do more cultures to find out if any bacteria have invaded his immune compromised body! So far, so good! We'll keep our fingers crossed and keep praying.

We are more than ready for his new little stem cell buddies to take root and start producing things like PLATELETS!!!!!! You will hear a grand shout from Kansas City that might just raise your roof when those little guys decide to engraft.

Isn't it amazing, Joshua's life depends on those itty bitty cells doing their job, and those little cells don't do anything without direction from God himself who knows the perfect timing and orchestrates everything from the largest living being to the littlest of cells trying to save a little boy's life! The maker of the universe is in charge! Not the doctors...not the parents...and not the cancer!

Father God, I am so thankful that I know you are sovereign! You have proven that to us over and over and that is where my peace comes from. You are "over" our lives even in the midst of neuroblastoma! I can trust you with everything and can depend on your unfailing love! No, I don't know the outcome of whether or not Joshua will be here on earth as long as I want him with me, but I know beyond a shadow of a doubt that you will walk with us side by side every step of the way. For that I thank you with all my heart, and for today...that is enough.

That His Glory May Be Known,
Janene

PS: 4 years ago today, my dad had the privilege of leaving this earth and entering the doors of Heaven! I miss you dad and often wonder what you would say about Joshua's cancer! I can almost hear your voice telling me that it's OK! Dad, thanks for teaching me that death, when you know Jesus, is victory whether you are 59 or 5! I love you!

Later...
Joshua has done about the same today. They think the mega doses of platelets stopped his bleeding and they let him have today off from that nasty nose medicine. I'm sure Joshua is grateful!

We see hints of improving...like Bridget our nurse says his mouth looks better than Friday. And, Craig says he is throwing up less and just spitting now. (I may have a bad habit to break after all this.) I don't think any other mom in the world has told her son to "spit, just spit it out" as often as I have:)

His diarrea is somewhat better, but he isn't swallowing yet. I'm sure he will be good and scared to swallow anything for a while. Now I understand why many children have problems eating and maintaining their weight after transplant. I never thought that would be an issue with Joshua, but it might!

I would also like to ask those of you who pray to lift up another little friend named Justin from our Neuroblastoma List Serve group. He is 2 years old and relapsed with Neuroblastoma this Summer. He was doing very well just a few weeks ago, but took a turn for the worse last week. He has just a few days to a couple weeks here on earth. Please pray for him and his family during the final stage of this journey for them. It would mean a lot to me personally as I am learning to love so many of these children who are fighting the same monster we are!

Sunday, October 12, 2003 8:10 AM CDT

Good Morning,

I just talked with Craig on the phone and he indicated that Joshua's night had been much better! I didn't find out much more than that right now, but that's all I needed to hear! Dare I hope that we're done with the worst????????????????????????????????????????????????????That is the question of the hour! I will update more later! Enjoy your Sunday!

That His Glory May Be Shown,
Janene

Psalm 105:1-5

Give thanks to the Lord, call on his name;
make known among the nations what he has done.
Sing to him, sing praise to him'
tell of all his wonderful acts.
Gory in his holy name;
let the hearts of those who seek the Lord rejoice.
Look to the Lord and his strength;
seek his face always.
Remember the wonders he has done,
his miracles, and and the judgements he pronounced

Half-time Report

I talked with Craig at half time of the Chiefs game. Joshua was laughing and seemed to be in good spirits. He is running a fever which we're not sure about, but his liver enzymes continue to drop and he is receiving the anti-fungal medicine to prevent fungal infections during this time when he is so compromised.

Joshua took several drinks and continues to swallow his 2 pills a day. If it weren't for the TPN nutrition, he would be losing a ton of weight.

We hope the stem cells will engraft quickly. We hesitate to think Joshua has taken a turn for the better because we know it could be a roller coaster for a while yet...but my hopes are still up!

We send our love and gratitude out to all of you. At last count, we have people across the US, Canada, China, Ecquador, Ukraine, Thailand, Czech Republic, Holland and France praying for Joshua!

That blows our minds and we thank God for orchestrating such a loving support team for our son! Thanks for being a tool used by God to help Joshua battle Neuroblastoma!

Janene

Saturday, October 11, 2003 8:38 AM CDT

Good morning!

I am at home this morning with Bethany. I woke up to the beautiful music of my 8 year old daughter singing in the other room...

"I have a Hope
That will never fade away
He's alive in me, living day to day
I have a hope
and my hope has a name...
Prince of Peace and the Lord of Love
Jesus Christ the Son of God
King of Hope He will always be
His great name holds my destiny
I have a hope!"

In my opinion, that's the best way to wake up in the world! Bethany's faith is a constant encouragement to me during these difficult days!

I talked with Craig on the phone. He said Joshua had another difficult night. I think it is pretty much to be expected at this point. He was up every 45 minutes or so to either throw up the mucous and blood junk or to have the wonderful diarrea that accompanies transplant. They increased his pain medication and tried different nausea meds for him all night!

Thanks so much for your incredidible prayer support for Joshua! We are constantly amazed at the level of support from around the world He has blessed us with. You all are amazing and we thank God for you often.

That His Glory May Be Seen,
Janene

Evening:

Craig reports that Joshua is about the same. The diarrea might be improving some, but he is still having a lot of nausea from the mucous and blood he needs to get out!

We are hoping that Joshua's stem cells will engraft (start producing blood products like white blood cells and platelets etc.) some time next week! If we are lucky, it might happen around Wednesday. It could also take quite a bit more time than that. We will just have to wait and see!

Grandpa and Grandma were up again and spent some time with Joshua so Craig could get out and see some daylight! They played a little, but Joshua is spending almost all the time in bed watching tv or videos and trying to sleep. The TPN nutrition he is one is keeping him from losing weight for which we are grateful. The amazing thing is that he can't swallow anything except his pill. He has to take a very important pill morning and evening and that is the only thing he really swallows all day.

Well, I hope to be able to report tomorrow that Joshua had a better night and actually slept more than 45 minutes at a time. God is good and it will happen!

A good friend of mine wrote me today and gave me a great quote to help deal with all the questions a child's illness brings up:

"To know God is better than to know the answers!"

That is so true and I pray today finds you pursuing that intimate relationship with Jesus Christ...our hope for eternity!

Friday, October 10, 2003 5:25 AM CDT

Good morning.

My heart is absolutely breaking this morning. Joshua is one sick kid. He has had an awful night. He has been alternating between liquid stools, throwing up blood and suctioning out his own mouth becuase it is too painful for him to swallow his own saliva.

Watching my little baby boy go through this kind of torture is just about more than I can handle. My only hope is that it will go quickly, but they say this will likely be bad or worse until next Week sometime. Thanks for remembering my Joshua in your prayers!

Jesus, keeper of this life
You are my refuge my Saviour and guide
Watch over this little one tonight
Guard his every footsteps as he travels through this life
And in some quiet moment, draw him to your side
That he might come to know you Jesus
As the keeper of this life!

That His glory may be seen,
Janene

11:00 AM
Joshua is hanging in there this morning. They are trying to figure out which drug is causing him to break out and itch so bad. We may be trying a different antibiotic than Oxcicilan (sp?).

He continues to have nasty diarrea, and throwing and couphing up blood and mucous. As best as I can tell, his whole intestinal tract must be about like raw meat!

We have a very nice nurse again today names Bridget. Today when Bridget called the transplant pharmacist to come in and look at Joshua, he went over to Bridget and said "I love you, can I give you a hug". For those of you who know my son, you can see that he still has his hugging spirit! He doesn't get angry or mad he is feeling so awful, he just loves the people who are trying to help him.

I told Joshua that he is my hero this morning. He has the attitude about life that I will always try and live up to!

Last night, I was reading Coach John Wooden's book "One on One". He quotes Horace Kellan with the following:

"There are those who guide their lives by the fear of death.
There are those who guide their lives by the joy of life.
The former live dying;
The later die living.
When I die, I intent to die living."

Trying to live today with much joy,
Janene

Thursday, October 9, 2003 7:59 AM CDT

Good morning on day 1! That's how they count the days after receiving the stem cells! Joshua had a decent night last night. They hooked him up to his pca pump late last night and I think the fentinyl kept him sleeping better last night. He woke up twice and pushed his pain button and then went back to sleep.

Yesterday evening Joshua watched "Space Jam" again which seems to be our movie of choice this week. He laughed at the funny parts which is always music to my ears. His attitude and spirit is still evident despite the pain. For that, I will always be grateful! Lately, when things are hard, I find myself reading in the book of Psalm. I will close with Psalm 16:8-11.

I have set the Lord always before me. Because he is at my right hand, I will not be shaken. Therefore my heart is glad and my tongue rejoices; my body also will rest secure, because you will not abandon me to the grave, nor will you let your Holy One see decay. You have made known to me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand.

Please know how much we appreciate your prayers and support for Joshua during this time. I pray that His sufficient grace will be most evident to each one of you in the difficulties and joys you face today!

May His glory be shown,
Janene

This evening:

Joshua has had a very itchy day! He is reacting to something that nobody knows for sure. He is a bit itch crazed! We are switching meds and trying different suggestions. They say kids get a rash when stem cells engraft, but that it's way too early for Joshua. I know it's way too soon, but I would love to see that kind of miracle. Then, the itching wouldn't be a bad thing.

Grandpa and Grandma were up today and stayed with Joshua this afternoon so I could go out for a few hours. That was a break I appreciated, as well as Joshua. He was sad when they left and said in his most saddest and quiet voice, "but I will miss you".

Craig will probably come back up tomorrow if he is feeling ok. Hopefully he is germ free and 100

I will sign off for tonight. Thanks again for checking in on us. We love you and thank God for you!

Wednesday, October 8, 2003 9:16 AM CDT

Good morning on Day 0!

I just talked to Craig on the phone and he said Joshua had a good night and woke up happy. He slept well and woke up asking for chicken noodle soup. When Craig said he didn't think they would have it until noon, Joshua said "that makes me very sad". Craig called and they are bringing it up.

They started TPN for Joshua last night. That is liquid nutrition through his line. Since has has lost weight, they decided it was time. He will probably stay on TPN until he goes home or later.

The stem cells should be picked up from KU in about 40 minutes. In 3 hours, hopefully everything will be completed. I will update later and let you know what happened.

Craig appears to be getting a cold, so I am going back now to take his place early. We can't risk anything with his counts and immunity at "0".

Thanks for your prayers and support. We thank God for you and are filled with gratitude because of each of you! May God richly bless you this Wednesday as you live for Him!

May His Glory be evident,
Janene

1:45 PM
Joshua's stem cells have found their new home...his bone marrow! The stem cell transplant started about 11:30 AM and was complete by around 12:20 PM. Joshua had no recactions or complications for which we give thanks to God. The stem cells were infused into his central line and according to the doctor were in the bone marrow in just a few minutes. Now, their job is to engraft and start making new blood products so Joshua can get well.

Joshua is miserable and very irritatable, He is very mad that he can't swallow food. He keeps asking for food, and then spits it out when he can't swallow. They will probably be staring him on the pca pump for pain with fentinyl here anytime. Please pray for Joshua during the next week. He seems so little to have to go through so much torture!

Our thanks to so many of you who lift up Joshua daily in prayer. You are our blessings in the midst of this time.

Tuesday, October 7, 2003 8:08 AM CDT

Good morning and Happy Tuesday!

Joshua had a short night last night and has now been awake since 3:00 AM. He was wide awake, yet tried to sleep so hard. I finally gave in and let him watch TV at 6:00 AM and I think he was relieved.

He did start drinking in the middle of the night and even asked for orange juice. I guess the mouth sores aren't formed yet because he finished it and then asked for milk.

Tomorrow is day 0 when we get Joshua's stem cells. I am anxious for tomorrow because then we will be finished with one more leg of this transplant journey.

Craig is coming today and we will be switching. I haven't seen Bethany since Friday morning so I am anxious to go home. Craig is bringing wireless controls for the game cube so Joshua will be able to lay in bed and play sonic with dad. They are 2 peas from the same pod...go figure.

On a sad note, our friend Dalton from the Neuroblastoma list serve passed away from this monster yesterday morning. He was a little older than Joshua and had been fighting Neuroblastoma since 1998. Please pray for his family as they have a long journey ahead of them in dealing with this incredible loss. Every week it seems, I see another child relapse with Neuroblastoma. It is a constant reminder to me of the strength of this cancer. It also is a reminder to me of how many people need the hope for eternity that a relationship with Jesus Christ brings. Pray with me that Joshua's cancer will be the platform for many people to find the hope of eternal life. (John 3:16)

Well, we send love and hugs from Kansas City and hope each of you has a great Tuesday. I will update from home later.

In Hope,
Janene

Monday, October 6, 2003 8:55 AM CDT

Good morning!

We had a good night last night! Joshua slept better than he had since I have been here. He woke up at 3:30 AM and told me to "take his tubes out with his cancer". Come to find out, he had a dream about swimming and he woke up thinking these tubes have to come out so he didn't get them wet.

Still no visible mouth sores as of yet. Our other 2 friends with Neuroblastoma who are a few days ahead of us in transplant are both on morphine drips for the pain. I'm hoping and praying Joshua is protected from the worst of it. The worst part for me is expecting him to be in this unimaginable pain I keep hearing about. Uugh! I just want to get this in our past.

Last night, I woke up and was praying for him and the following song came to mind. This was my prayer for Joshua last night!

Jesus, keeper of this life
You are my fortress, my saviour and guide!
Watch over this little one tonight.
Guard his every footsteps as he travels through this life
And in some quiet moment, draw him to your side.
So he might come to know you Jesus
As the keeper of this life!

As Joshua's mom, my biggest desire is that he might recognize his need for a Savior from his sins and come to a point when he commits his life totally and unreservedly to Jesus Christ. He is understanding bits and pieces of that process, but is still on that journey. I pray he will have the opportunity to make that journey his dad and I call "the great adventure".

That is our prayer as a family for all of you as well. Perhaps Joshua's illness will help you see the incredible need we all have to have a personal, life changing relationship with Jesus Christ. He is our hope, our strength and truly "the keeper of this life".

Well, Joshua and I wish you a great day from room 4421. May each of you fully recognize the grace of God all around you today...even on a Monday:)

Much Love and Gratitude,
Janene

Tonight:

Joshua has had an OK day. He has struggled with mucasitis and nausea, and has been a bit irritable. He told a few doctors and a visitor it was time to leave. Normally he is a nice kid, but he is not feeling very well and I understand his irritable ways.

They are keeping close watch on his liver function because of some test results they took today. They will be discontinuing a medication trying to solve these issues. Anything with the liver makes me nervous. I hope they will soon have this under control.

Nette brought lunch today and Joshua ate 1 bite of a chicken nugget. It's pretty sad when that is doing good. He's had a few other bites of things today and a few sips, but is trying hard not to let anything into his mouth.

Grandma Della came up today and visited and Lynda Gimple came in to say hi. I saw Ryan and Cheryl and the kids for a few minutes in the waiting room which was great.

Tomorrow, Joshua will really be 5. I can hardly believe 5 years ago, this precious gift was sent into my life from God above. How thankful I am to have been given the past 5 years with my incredible gift. I don't know if I will have another year, but this evening, my heart is filled with gratitude for the time we have been given. He has taught me so much, and has been a continual blessing in our lives. I wouldn't trade it for the world!

Sunday, October 5, 2003 8:43 AM CDT

Good morning!

Hi from room 4421! It's beginning to feel like a cage of some sort:) We're doing fine though! Joshua slept good all night, but woke up every now and then to charm the nurse and of course his mom. In the middle of the night when he wakes up he is wide awake and sweeter than pie! He is such a charmer!

We will be done with chemo around 11:00 AM. Yea! Then, we will wait 72 hours and have the stem cell infusion on Wednesday morning around 11:00 AM. Joshua's counts are dropping and by then will be very low I'm suspecting. He is starting to have mouth pain and pain down his throat when he swallows. This is from the chemo breaking down his mucous lining from his mouth all the way through his digestive tract. It will likely get much, much worse barring a major miracle. I hear the pain often gets so bad they have to use the big gun pain meds. It will be an interesting time here in 4421.

Grandpa and Grandma are coming up this morning and will spend a few hours with Joshua. Nette and Carrie came last night and brought Taco Bell and a new batman video.

Well I better go fow now. I will update later. Just wanted to say thanks to all of you checking in on Joshua. Your prayers and support mean the world to us. On a side note...a family on the Neuroblastoma List Serve that I'm a part of, really needs our prayers. Their son Dalton relapsed this Summer and is currently on Hospice. His time here on earth is very limited and his family is in unimaginable pain. It would mean a lot to me if you pray for Dalton and his family. Thanks so very much!

In Hope,
Janene

Afternoon Note:

Joshua has spiked a fever which isn't a good sign. He has been feeling rather horrible all day. They did the cultures from his line to check for bacterial infections and started the antibiotics. Joshua and Fortaz are becoming good friends. It has already helped us out of numerous difficulties. The good thing about Children's Mercy is that when kids get fevers, they culture from their lines and not their arms. Joshua was used to getting stuck any time he got sick...talk about insult to injury.

After they cultured him, he threw up again and has since perked up. He said "mommy I feel better now and I'm hungry". Those were welcome words since he has refused food and drink all day today. He is now sitting with a stack of pringles and hasn't yet gotten the courage to put one in his mouth, but at least he's trying.

Grandpa and grandma came earlier today and visited. They stayed with Joshua for a couple hours while I ran to Walmart and Wendy's with my sister. Joshua is a lucky little boy to have grandparents who would drop everything at the drop of a hat to be with him or help him in any way.

I will sign off for now. Joshua is watching TV and has a spitting rag near him at all times. I am seeing the beginning of the mucasitis as he is trying to get the nasty stuff out of his mouth constantly now. I just pray he will be one of the few who have relatively few mouth ulcers and sores.

As always, thanks for your prayers on Joshua's behalf.

In gratitude,
Janene

Saturday, October 4, 2003 8:21 AM CDT

Good morning! Just wanted to let everyone know that Joshua had a decent night. He went to sleep by 8:00 but then had to wake up for the nose anti-fungal preventative medicine which is totally nasty. So after a major trauma, he went back to sleep and slept pretty much until 2:00 AM. Then, we were up til 5:00 or so. He tried and tried to sleep, but takes after his daddy with sleeping when he is on chemo. So, then we finally made it back to sleep just in time to wake up at 7:00 to throw up. Then, more anti-nausea medicine and finally time for cartoons. All in all...not a bad night on transplant chemo.

Mom, on the other hand is doing much better. Even the hospital couch bed wasn't awful so I know my back and neck must be tons better:) Thanks for your prayers on my behalf.

So now we are officially on our last day of chemo for transplant. This could be the last chemo Joshua ever has to have in his body. That is what we are hoping for. If we can get through the big relapse question and secondary cancer concerns, I may never have to pronounce words like melphalin, cyclophosphamide, and Etoposide again.

I think we will spend the day watching Thomas the train videos and maybe a couple trips to the playroom thrown in if we're up to it.

We love you all and hope you have an incredible Saturday! Enjoy the beautiful Fall day that is truly a very special gift from God.

In His Hope,
Janene

Noon:
This morning we had a visit from Loren and Jen and Les and Michelle and Braden. They wanted to come see Joshua before his counts drop all the way and they brough food and a box of goodies with all kinds of Bob the builder stuff. Thanks guys:)

Joshua continues to hang in there, but says often that he wants to go home to Topeka. It's impossible to explain stem cell transplant to him, so I usually just say "we need to stay so they can make the cancer go away". He is such a trooper and takes everything in stride. He constantly teaches me how to have an accepting spirit about the rough things in life. He accepts everything without getting angry and bitter about life! He still believes the best about people and things. (I think his daddy must have taught him that.) His outlook and attitude about life has taught me so much and has earned my utmost respect. Thanks Joshua for all you teach me every day. I love you forever!

Friday, October 3, 2003 3:17 PM CDT

Joshua is doing OK today. He has been in pretty good spirits and was very happy to see me when I got here around noon. He and Craig were playing "mousetrap" in the play room. Craig and Joshua have a very special relationship and I am so thankful that Craig and I can partner fully in this battle for Joshua's life. He is a constant source of strength for Joshua, Bethany and myself. Thanks Craiger...you are the best.

We are on day 3 of transplant chemo. That means we are over half done with this leg of the transplant journey. The big stem cell day is coming soon. We are hoping that the anti-nausea medicine will continue to work and that we can get through this part relatively pain free. Well, I better go for now. Joshua wants marshmallows believe it or not. And when a kid in transplant asks for something to eat, they usually get what they want because most kids don't eat and the doctors and nurses would give them just about anything just to get them to eat.

Tomorrow I hope to report about our most recent CT Scans. We have heard preliminary reports that the lymph nodes in question in his neck area are totally gone. That would mean that Joshua has NO EVIDENCE OF NEUROBLASTOMA. Sure, he likely has the micro cells that are floating around trying to cause trouble, but if the scans say what we think, all visual evidence is gone. That is truly great news! Enough said...I'll write more tomorrow. Have a truly blessed day and remember to thank God for the incredible blessings He sends your way every day!

Thanking Him,
Janene

Thursday, October 2, 2003 10:23 PM CDT

Today was day 2 of transplant chemo for Joshua. Craig said Joshua was feeling a little sick this morning, but started feeling better later this afternoon. Rumor has it that he played "Sonic" with Grandma Myrle! Joshua's favorite part of the day is playing his video game "Sonic" and his worst part of the day is taking his daily bath! With all the dressings etc., it is quite tramatic.

Craig was with Joshua again today. I woke up with severe neck pain and ended up at several doctors for most of the day. I have some medicine and can't wait to get up to the hospital tomorrow morning to see Joshua! When I go in the room he will probably say in a loud voice "Mommy you are HERE!" That will be all I need for the day:)

I'll write more tomorrow! Thanks for checking in and for your overwhelming support and prayers.

Janene

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