Carlson Chronicle

Light the Night Fundraiser - 2011

2011-10-11T07:41:00.002-06:00

Light The Night Walk is the Leukemia & Lymphoma Society's evening walk and fund raising event. It is the nation's night to pay tribute and bring hope to thousands of people battling blood cancers and to commemorate loved ones lost.

Team Jacob will be partnering with Genghis Grill to raise money for lifesaving research

October 13, 2011

11:00 AM- 10:00pm

1920 Eldorado Pkwy, McKinney, TX 75069

Genghis Grill has generously agreed to allow us to earn up to 20% of each guest check that is paid and accompanied by this flier. Your family gets an amazing dinner and you help raise money for a great cause!

http://pages.lightthenight.org/ntxok/Plano11/TeamJacob

Click Here for a page that is easier to print.

Make A Wish

2011-07-19T07:38:00.003-06:00

Last Wednesday, at the Carlson Celebration, Jacob received a "Special Delivery" from some new friends of ours. As he started to unwrap the giant box he found a clue and a little blue airplane.

Then there was a smaller box that held a 2nd clue and another few presents for Jacob. He was excited that the bag was the colors of the Minnesota Twins but he had not yet figured out what the clues were leading to.

His next clue actually left him a little bit more confused but by this time everyone in the room was getting really excited!!! Where are these clues leading us?

Then came the smallest box - with the very best of all clues and presents.

You see, our new friends are from the Make a Wish organization. The clues were telling Jacob that he has been approved for his wish and that he would be leaving on Monday to fly to Minnesota. Jacob's wish was to meet the Minnesota Twins and they were inviting him to come.

In the last 38 months of chemotherapy we have seen Jacob overwhelmed with many things. Pain, fear, frustration, anger, doubt, uncertainty are just a few that we dealt with on a fairly regular basis. When Jacob realized that he was getting to go on his Make a Wish trip we again got to see him being completely overwhelmed. With Joy!!! Pure, unadulterated JOY!!!

Joy so overwhelming that the tears came and all he could do was put his hand to his face and drop his head because he was so happy he could not process the flow of emotion.

So many times the world teaches us that wishes don't come true. Let me encourage you to not embrace that as your reality. This week is all about celebrating the fact that wished DO come true.

On Thursday Jacob rec'd another delivery from the Make a Wish organization. Twins balloons and the Twins Mr. Potato Head - so cool.

And speaking of cool, they wanted Jake to stay cool in the Texas heat while waiting for his trip so on Friday a Dairy Queen Blizzard Cake was delivered to help us accomplish that.

On Saturday we also had gifts. Taco Bell provided dinner for the family. Picking up Taco Bell after treatment and ER visits has became, well, almost a tradition in our family and it was so fun to enjoy when we had been nowhere near a hospital or the clinic.

Saturday also brought with it our Make a Wish itinerary so we could have a peak at what the week would hold.

There were also a few supplies for the boys to help them out on their very first airplane ride. Mauer backpacks, luggage tags, Twins playing cards, Make a Wish t shirts and baseball hats. In addition to that, the sons of our Wish coordinator had sent along a Twins pennant for Jacob. Could that be any cooler - we so often get to see the very best of people - even some very young people!

guest post - from Joshua's school blog

2011-01-15T20:22:00.000-07:00

In my house we are all Christians. We read the Bible, pray and go to church. We go to an amazing church that my family and a couple others started called Vintage church. All the family's that helped start the church moved from Denver, Colorado to Texas. Vintage church's motto is Learn to live, Live to Serve. So talk to your parents, click on the link bellow, and join Vintage church on Sunday mornings at 10:30

Tonight our family is starting a Life group in our house. A Life group is when You get some family's together. Have a meal, chat, make some new friends, and who knows. They might become a big part in your life. In our Life group all the family's our from our church, Vintage church. To learn more about Life groups/Small Groups and the Vintage Church. Click on the picture below to view the site.

Astros

2010-11-05T21:29:00.002-06:00

I am loving me some baseball and specifically I am loving me some Astros tonight. Every aspect of this team is so much fun!!! We have great kids who work really hard to play good ball and the families are so awesome - encouraging and just fun to be around.

Tomorrow we get to play in the championship game and while it will be great to win :) there is no way I could be any prouder of these boys and the way they have played and handled themselves this season.

GO ASTROS!!!

Life and Baseball

2010-11-04T19:48:00.004-06:00

Yesterday, November 3, ended in a rush when we found out that the baby girl our friends are adopting was being rushed in for an emergency C section delivery at 32 weeks. The lists that had been started now needed to be expedited so that Joy could get to baby as soon as possible. Due to some of the privacy laws, once Mom was taken in for the delivery there was no more news coming our direction. That makes for a long night, full of emotion and as we left last night we ended with prayer. Our God is a BIG God and the author of life! A couple of weeks ago God gave Joy and Chris the name for this baby, Zoe, which means life.

How exciting this morning as the news came in

Apgar score of 8-9
Baby does not need to be on oxygen
baby tested negative for drug exposure
3lbs 9oz
15 inches long
head full of beautiful dark hair
Ronald McDonald House in the vicinity that Joy can base out of
Relatives traveling to help Chris with the girls while Joy is gone
Chris getting OK'd to take a few days off now to care for the girls and to travel for Joy and Baby when they are ready to come home
Joy's Mom was able to travel today to be with her and help her during the first few days

So I have been feeling very thankful for life, in general, and for life *Zoe* specifically.

Today - after a busy day of packing, organizing, and helping at the Langleys, I got to go watch my boys play in the first game of the baseball tournament. I love baseball. It was a great game in the freezing cold and the Astros played a great game and ended up winning 5-2. GO ASTROS

Cold Rain & a Warm Oven

2010-11-02T19:37:00.002-06:00

Some of my baseball Mom's may get upset with me, but today I am so thankful for cold rain. Rain, rain, and more rain that delayed the baseball tournament. Jacob got his cast off with hopes of playing but now he is fighting off sniffles and a sore throat so a delayed tournament gives lots of time for chicken noodle soup, sleep and healing.

I am also so thankful for a warm oven! Baked potato, pork chops and chocolate chip cookies :P

Being Thankful

2010-11-01T20:26:00.003-06:00

I have a great friend who just shared on Facebook that they are going to spend November being thankful. I love it and I think it is such a great idea that I am stealing it!

For today, I am so thankful for my family and for the time we get as a family. 3 Carlson men on the ball diamond and me watching and cheering - that's how it should be.

Hugs, Kisses and Prays before bed - that's also how it should be.

Super Hero Roll Call

2010-10-22T08:59:00.006-06:00

We are now 1 day away from the Leukemia & Lymphoma Society Light the Night Walk and it is time for us to break out the Team Jacob Super Hero Roll Call.

We had many wonderful friends come out to support Jacob and our family at our Genghis Grill Fundraiser. It was such an amazing feeling to "see" their love for us and their passion to find a cure. Thank you to everyone that participated - You are our Hero's!

Jubilee Calhoun & McKenlee Rice
Karin Boyer
Ross Montgomery
Jeff and Desiree Truitt, Brayden, Laney & Ainslee
Bobby and Christy Holladay, Lizzie & Gianna
Suzanne and Sammy Altaans, Alex
Stacy Tate & Crew
Jennifer and Adam Townsend & Crew
Laura Usery and Doug Ketcham
Jessica Encinias
Shaina Womack
Jessie Shipman & Kaden
Marty St John
Amber Sullins & Jayden
Melanie and Crew

We had the pleasure of seeing many of you as you dined and after a bit i even remembered to get my camera out. Here are a few snapshots of the evening.

For anyone that I did not see or hear that you were there - thank you, Thank You, THANK YOU!!!

We have also had friends donating on our Light the Night website page and we are blown away by your generosity. Thank you so much!

Joy Langley
Kathy McShane
Kathy McShane (no, I am not repeating myself - you have just doubly blessed us :)
Stephanie Fernandez
Deanna Carlson (the internet does not have enough space for all of our thanks to you)
Adam Buettner

We have about 24 hours left till the walk and we are getting excited and geared up - thank you to all of you for partnering with us!

Great Night - Great Friends!!!

2010-10-14T07:29:00.002-06:00

We had an incredible time last night at Genghis Grill. We had an amazing turnout of friends and we went home last evening feeling absolutely blessed beyond description.

We want to thank all of you who came out to support Team Jacob and we also want to be sure and thank Genghis Grill and their staff for their hard work last night and for allowing us the opportunity to partner with them.

We are working on getting some pictures together from last evening - so look for them shortly!!!!

Light the Night Fundraiser

2010-10-11T12:39:00.009-06:00

Team Jacob will be partnering with Genghis Grill to raise money for lifesaving research

October 13, 2010

11:00 AM- 10:00pm

1920 Eldorado Pkwy, McKinney, TX 75069

Genghis Grill has generously agreed to donate 20% of each check that is paid and accompanied by this flier. Your family gets an amazing dinner and you help raise money for a great cause!

http://pages.lightthenight.org/ntx/Plano10/TCarlson

Click Here for a page that is easier to print.

Time flies when you're having fun!

2009-10-20T11:19:00.005-06:00

How did it get to be the end of October? I am in the middle of planning costumes and trick or treating and I am doing it at my house in Texas. Wasn't it just yesterday that we were getting excited for summer, packing for camp and enjoying life in Denver?

They say that time flies when you are having fun -but it also happens to go pretty fast when you start making drastic life changes! I guess that explains how I kinda lost track of June, July, August and September. Lots has changed for the Carlsons and here is a quick update for those who may have missed a few plays.

We started our summer early by skipping school and going to kids camp in Cedaredge, Colorado. Brian and I are both challenged when it comes to kids in mass but I think we held our own and got to make some great memories with our boys. At one point Brian was walking back from the showers and as he got to their room he could hear the other kids telling Jake and Josh, "Your Dad is awesome!" You can't plan (or buy) that kind of word of mouth ;)

The speaker at kids camp was Pastor Brian Henley, a church planter from Michigan. In addition to the amazing job he did all week with the kids we got to have a candid conversation with him about church planting. Brian H. told us about several lessons he learned the hard way (picking a funeral home as the launch venue) and a few things that were a must. One point he mentioned several time was the importance of having people on your team that were "all in". People who shared your vision and were willing to chase it whole heartedly with you.

This struck a chord with us. Six months before camp our amazing friends Ken and Jalee Rice left Denver to start the process of planting Vintage Church in McKinney, Texas. When Ken first told us about going to McKinney - we were immediately captured by the vision God had given them. At the time there was no open door for us to make the move to Texas and despite a longing to join the journey we had resigned ourselves to hearing about it from a distance. Coming back from camp to find Ken and Jalee in town giving an update on Vintage was a great surprise for us - we were excited to hear about what was happening.

During that weekend, Brian and I got to sit down with Ken and have a conversation that has started our own adventure. In that conversation Ken used a phrase, "the power of the ask" and an invitation to come be part of Vintage took root in hearts that had been prepared... at kids camp. By that point Brian already knew - we were supposed to be in McKinney - we were supposed to be Vintage.

And so began a crazy summer of watching God be BIG and faithful and miraculous.

Because Brian really likes the company he works for we started to think of ways that we could make a job in Denver compatible with living in Texas. We dreamed about how awesome it would be if Brian could stay with his company and work remotely. Because we still had the phrase "the power of the ask" in our heads we decided to be brazen enough to do just that, ask. Brian presented a proposal to his boss that detailed him moving into a new position and working from home in Texas. As June gave way to July we got a response that, to be honest, we were not expecting. Yes.

July became a crash course on McKinney. Research, rentals, school systems, real estate all led to a house hunting trip in the middle of July. We packed the kids into the van and left Denver on Wednesday evening, drove all night and then spent three days looking at houses (lots of houses). On Sunday we loaded back in the van and after a nap at the start of the trip (desperately needed by me to simply cope) Brian and I made a short list of the houses we liked. The first home we submitted an offer on is the home we are living in now - and we love it!!!

July is also the month my Daddy had a heart attack and multiple surgeries to stent the heart arteries. I was able to fly into Kansas City and then Cheri and I drove up to spend a couple days with the family. This is the first time that there has been a major medical issue for a parent and it puts new perspective on things. I was so thankful for time with them and with my siblings. One night Mom took us out to dinner at the Drake - Chere, Shawn & Amanda and myself. What a gift that night was - reconnecting and laughing and enjoying my brother and sister. I also got a chance to have lunch with Janelle and to say hello to James (these were my two best friends in high school) and it was really great to see their faces and hear how their lives our going.

After the house hunting trip we spent our last few weeks in Denver cleaning and packing and cleaning and packing and cleaning and packing. Around all that we tried to spend as much time as possible with the Denver people we love so much. Even thought we had only been in Denver for four years God had given us many "lifetime friends" there and leaving that was going to be really hard. To everyone who changed their schedule to see us extra during those last few weeks, Thank You so much. Brian and I love and miss all y'all so much!

On Thursday, August 20th we loaded into the van around 1pm and started the long drive to McKinney. We were packed to the gills with one goal in mind - CLOSING! Brian started the drive with an empty stomach and multiple large Red Bulls so he was starting to have the shakes by the first stop. A belly full of Subway and a nap helped to put him right and we traded driving back and forth. I happened to be doing the last two hours heading into McKinney at about 4AM in the middle of the most awesome lightning storm I have ever seen. Between bouts of worrying if the car top carrier was water proof or water resistant (it was not water proof and, truth be told, I don't think it resisted very hard either - sopping wet bedding and clothes) it was amazing to see the lightning strike so fast. By the time Brian woke up it felt like I had been driving under a strobe light and I needed his help to make sure I was really seeing the road correctly. After a breakfast at IHOP (which was so not good that it is currently banned) we headed to the closing site to take a nap in their parking garage.

Closing went well on our end - there was a glitch and a delay with the seller sending their documents so instead of getting the keys at noon we got them after 5pm. This meant we had possession of the house but no utilities till sometime on Monday at the earliest. Originally we were going to stay and clean and work on the house all weekend and then head out for vacation. No water makes cleaning hard and flushing impossible so at 5:30pm we decided to empty the van, reload it with vacation stuff and get back on the road. After a quick shower at the Rice household (Thanks again - no one wants a long van ride with stinky people) we were headed north to Minnesota.

In case you missed any of that the travel was

Thursday - Denver
Friday - Dallas
Saturday - Minneapolis

which is why we consider ourselves road trip royalty.

Vacation was a week at Grandma Dee's house in the cities and then a week at Grand Vu lodge on Leech Lake. Both weeks were amazing. With Brian being between positions at work it was the first trip in a long time that he did not have to work through, he was not on call!!! The boys loved having Dad all to themselves and we had a great time together. A few highlights of the trip was taking the family to Valley Fair to celebrate Josh's birthday, Grandma Dee came and it was fun to hear the stories of how she would take Brian there when he was about the boys age. I also loved seeing the boys play with Grandpa Don - he is so proud of them and introduces them to everyone. There were several days with Jenny and John and all the cousins and we finally got to try the famous Perogi - homemade by Jen! Lake time is all highlight and I am so glad we got to spend time within the Krueger / Carlson clan. Fishing, swimming, eating, laughing, playing games --- all good!!!

After leaving the lake Brian and I headed to Burlington, Iowa for a few days at my parents house. Dad's health is stable but I wanted to take an extra opportunity to have time with him and Mom. We spent a day at Old Threshers - eatting, walking, laughing, looking. Dad rented a scooter so he could keep up with the grandkids and enjoyed it a little too much. I am half expecting one to become part of his everyday life - of course it will be a little more tricked out then the rental :)

We left Old Threshers to start the long drive home - to TEXAS!!! By this point we were ready to get home and work on getting settle in, curious to see what this new stage in life would hold.

Amazing friends had been in our house while we were gone, cleaning and getting it ready for our arrival. That made our first day home so much easier - just needed to touch up a few areas and we were ready to tackle unloading the POD on the next day. More friends came to lift, carry and sweat until the POD was empty. At one point I looked up and they had the antique Stickley dresser (about a gazillion pounds) over their heads to clear the bend in the staircase. Our friends ROCK!!!

Things are starting to settle in here at the Carlsons. We are mostly unpacked (you have to have a few boxes linger around for a bit), the boys are in school and making friends, Brian is sketching out the details of his new position, Alpha is up and going and Vintage is launched and now 3 weeks old. We can not even tell you how much we love being Vintage!!!

Life is good here in the new zip code and who knows, maybe things well settle down enough that I can blog a bit more often.

Mothers Day

2009-05-10T19:05:00.004-06:00

I am normally all for any day that wants to celebrate me, but I have to confess that this year I was ... hesitant? removed? apathetic? bah humbugish? I am not even sure what I am about Mothers Day this year - except that it is very different then last year.

Do you have days that live in your memory as golden? They were so close to perfect that they should be subtitled with, "God is in his heaven and ALL is right in the world!"

Mothers Day 2008 was one of those days for me. We had planned in advance to picnic at Washington Park in Denver with friends after church and the day was sunny and beautiful. On the way to the park we picked up Popeye's Chicken with an extra tub of red beans and rice just for me (it is a long standing addiction). From there we proceeded to laugh and play - volleyball, track ball, boccie ball - you know - all the important ball games. The boys stripped down to their swimming trunks and played in the creak with the Vernaza boys and relished every minute of it!

At the end of the day we went home exhausted, sun burnt and happy.

*****Then came the week that changed everything*****

This Mothers Day - 2009 - was gray and cloudy with mists of rain off and on. The Carlson men asked what I wanted to do on my day and I have to admit I felt more then a bit withdrawn (maybe life remembers the wounds of last year). Most of the day was spent giving me time and space to process through... I guess memories of last year.

And now, at the end of the night, the boys are getting ready for bed and I am realizing that this day - while very different - is no less golden then last year.

God IS in his heaven, I am loved by my boys and all is right in my world.

Muligan

2009-03-12T13:19:00.003-06:00

Wednesday was originally scheduled as "Sight" day in our experiment.

Most of our day rotated around Jake and the infection he is fighting - leaving little time to dedicate to using our sense of sight.

Not wanting to miss the opportunity - Sight day has been rescheduled for Saturday.

Day 2 - Smell

2009-03-11T16:59:00.002-06:00

I have to tell you that, for me, there was nothing profound about about Day 2 - smell.

Apparently we are a nasally challenged family.

As we talked about it Tuesday morning I explained to the boys the idea that our Pastor had shared on Sunday, lighting a candle during a time of prayer and bible study, and having that scent be associated with meeting God. I really like the idea of it - but maybe it takes more then one day for it to work. When I lit the candle my thoughts were much more of, "Hey - that would be great in the master bathroom!" then, "Wow, I am really connecting to God".

Jacob came up with his idea right away, which cracked me up because at the moment his nose was so stuffed up he couldn't breathe let alone smell. He explained that the smell of wood helped him connect with God because it reminded him of the cross. Joshua quickly added his thought that the smell of communion helped him remember that Jesus died on the cross.

My cynical instinct was to be dismissive of their ideas - Ok, great! You came up with an answer because I asked a question - but that is not really a way of connecting. I chose instead to think about the fact that Jesus is personal with everyone who follows him.

What about you? Is there anyone out there with thoughts / experience with using smell to connect to God?

Experiment Day 1 - Hearing

2009-03-10T15:17:00.002-06:00

Our Monday night discussion did not go as I had imagined it (which is so often true of our family times), due largely in part to the high fever, hacking cough and nose blowing of my oldest son. While it did not live up to my Rockwell musings it was really good and surprisingly deep.

Jacob shared how hearing other peoples prayers helped him connect with God. He explained that over the last year as he has heard people pray for, with and over him - it helped him to know that God was big and able to take care of him.

This reminded me of a comment made by a wise woman on my scrapbooking retreat. 16 women talking and sharing stories of life while we get the pictures in an album. One friend said in passing, "I like hearing everyone's stories because they know something about my God I haven't learned yet." That thought has lingered with me for weeks and I love that thought. When we live life together, sharing stories and prayers, we learn more about God.

Joshua told us that he learns a lot about God by listening to the stories and teaching at church. I have to brag a little and say that we have the best people ever working in our Kid Connect Church. They do such an amazing job at not just teaching the story and bible facts but making sure that the kids understand the meaning and how that impacts and effects thier life.

For me listening to music has always been a great way of connecting to God. Over the last year in particular there have been several songs that have really helped me anchor in my faith. The week after Jake was diagnosed I was driving back to the hospital and my mind and emotions were spiralling out of control. Every possible negative outcome was playing out in my imagination and I could not stop... I was to the point where I was having trouble breathing... and then a new song came on the radio, "Voice of Truth" by Steven Curtis Chapman. Hearing this song helped me focus on God's truth and the promise we have in him. It was exactly what I needed in that moment and now everytime I hear the song it takes me back to that place of faith. Another song that has kinda became my mantra is "Counting On God" by Desperation Band. First of all, it is just an awesome song and I love to sing it, not that I sing good - but I do sing loud! But the words - that is what I want my life to look like - that is how I want my life lived. When I hear the words - it connects me to God.

Hear it for yourself at

http://www.youtube.com/watch?v=0RTR5EYnit4

Sacred Pathways

2009-03-08T18:47:00.002-06:00

Our church is doing a series on Sacred Pathways for Lent and this week we looked at the Naturalists and the Sensates. I love the opportunity to pursue God in different ways so I am taking the "homework" assignments to heart.

The challenge for this week is two-fold

Schedule some time with God outside.
Use all 5 senses this week in worship.

I haven't made decisions yet about the where and when of the first (living in Denver gives LOTS of options) but I have a plan for the second.

As a family we are going to tackle one sense a day and focus on ways we can use that sense to pursue God and learn more about him and his character. We will then debrief at the end of the day.

Monday - Hearing
Tuesday - Smell
Wednesday - Sight
Thursday - Touch
Friday - Taste

Anyone wanting to spend some time on this pathway is more then welcome to join our family experiment - I would love to hear what you learn about my God.

Looking Back.....Looking Forward

2009-01-04T11:31:00.003-07:00

The Carlson family looked back on an incredible 2008. We learned this year just how essential it is to have an incredible family surrounding you. A family that includes those who appear on a family tree, and those who are considered family simply because of their proximity in our lives. We have taken an initiative in our family to pour ourselves into the lives of those around us. We reached a point this year where our pitcher had run dry and needed to be refilled. The love and support that we received from those around us was comforting and overwhelming all at the same time. There were people there for us when we needed physical support, mental support, and spiritual support. 2008 was a year where we got a chance to see the very best in people.

As we look forward to 2009 - we are anxious for the awesome things that God has in store for our family as well as for each of us individually. There are a number of areas where we have felt that God has been preparing the soil for an incredible harvest. Some of these areas will stretch us more than we would probably like. But many of them will allow us to grow in ways that can bring us closer to Him.

My prayer for our family in 2009 is that God continues to work His will in our lives and that we become increasingly purposeful in seeking after Him and listening for His guidance.

We thank you all for helping make 2008 a year that will never be forgotten. We also pray that 2009 brings incredible blessings in to all areas of your lives.

Celebrating Joshua!

2008-12-07T22:21:00.004-07:00

Starting Monday morning Joshua will be Star of the Week in his 2nd grade class.

Here are a few great photo's celebrating our awesome son.

Growing up!

2008-11-29T20:12:00.002-07:00

Joshua - 2nd Grade

Jacob - 3rd Grade

This weekend both boys surprised me by wanting to post on the blog. Jacob got things started after he spent an afternoon building with Lego's. He has so much imagination - he doesn't just build, he creates entire universes filled with action and adventure. Every piece is part of the story and has so much detail behind.

Joshua wanted in on the action the moment he saw his brother typing. His love and passion is baseball and he wanted to share a few of his favorite baseball cards with all of our friends and family. This year when we ordered school pictures, some of the wallets came "baseball card" style. Joshua immediately got out his binder for 2008 and put his new card in with all of the other Red Soxs players. How cute will that be to show when he is rookie of the year!

Joshua's thoughts on a few of his baseball cards

2008-11-29T11:31:00.003-07:00

Man what great stat' wouldn't you say?

What a picture!

What a player.

Nice stance!

What a guy.

Nice hit.

Man he's great!

Some fans.

No one like him!

What a throw.

Lego Jedi Battle Scenes

2008-11-28T16:15:00.004-07:00

The Sith have invaded the Jedi outpost base and have killed most of the Jedi!

A Jedi is holding onto the Jedi plank.

The prison cell.

Watch out for breakouts!

The droid shocker Sith.

Alien prisoner.

The Jedi outpost base.

Sith guard in action!

Maintenance!

2008-11-24T18:42:00.003-07:00

On behalf of all of us at the Carlson household - let me be the first to say - we have made it to maintenance! I don't just want to say it - I want to scream it, yell it, sky write it and shout it from the mountain tops.

Jake's counts came back today with very positive results, a huge jump in numbers (800's) indicating that he is producing blood. Wonderful, healthy, life giving blood!

Red blood cells - check!
White blood cells - check!
Platelets - check!

We have completed the first 4 phases of chemotherapy during the last six months and God has been faithful and present EVERY minute and EVERY step during the last six months. When we heard the word cancer there was no way we could fathom all that was coming our direction. Neither could we have imagined how the good would far out reach and out weigh any of the down side. I know that it sounds like a very trite cliche - but cancer has brought about so many blessing in our lives. Some of the greatest we have yet to see but are looking forward to them being lived out in our lives.

You - are friends and family - are some of the riches of these blessings. Thank you so much for your love, prayers, encouragement and every other wonderful act of kindness you have poured out on us.

Tomorrow morning Jacob and I will be heading into the clinic to start the first treatment of the maintenance phase. We will be in this phase for the next two and a half years and it is this stage of treatment that transitions us from remission - to cure. Jacob will be taking oral chem0 on a daily basis and having clinic visits once a month. These visits will consist of IV chemotherapy and every 3rd month a spinal tap with intrathecal chemotherapy.

During maintenance most kids are able to live a normal life. School (which Jake is very anxious to return to) church, playing and being fully active and on the go. We will need to continue exercising good judgment and limit exposure to sickness and disease but no more lock down!

Happy Thanksgiving everyone!

The Great Turkey Escape!

2008-11-24T11:10:00.003-07:00

Bruce Turkey doesn't want to be Thanksgiving dinner. He is imprisoned in a pot on the cupboard. He jumps out of the pot. He uses the Bat Rope to get down from the cupboard quietly. Bruce uses his Bat - Teleporter to transport underground and there Bat Turkey suits up. He teleports to the vent system. Bat Turkey climbs to the roof. He uses the Bat Rope to swing on the roof tops. At TM (turkey manor), where Bat Turkey's gadgets are invented, he gets in the Bat Plane to fly in to the turkey cave where he is safe. He meets Turkey Wing (you know - like Night Wing) for another adventure.

For more information go to www.BatTurkey.com

Story and Art by Jacob Carlson

The web site listed above was for story purposes only!
We do not support or endorse the British American Tobacco industry.

Quick Update

2008-11-22T08:54:00.003-07:00

I will try and write more this weekend....something with some substance. But for now, it is what it is.

Counts on Thursday were 180. We are moving in the right direction, but we thought they would be higher. We did not get info on the specifics such as platelets and red blood, but we assume they were good because the Dr took Jake off of all of the antibiotics he has been on for the last few weeks.

He is doing good - his appetite has returned to normal, his cheeks have begun shrinking, his energy is back up, his mood swings have gone away........ He is hoping for the hair to start growing back soon, it's starting to get a little chilly outside.

Here's to a quiet weekend!!!!!

Another week of tests.

2008-11-16T20:59:00.002-07:00

Jake is beginning to get a little cabin-fever. Due to the low counts over the last couple of weeks, we have had to limit the interaction that he has with others. This means fewer trips to the store, fewer trips to church, and few family outings. Most of his days are spent inside the house, keeping himself protected from the risk of virus or infection.

Today he was able to get outside for a little while. He played with his brother and couple of other boys from our neighborhood. These are some new kids that have recently moved into our complex. The 2 others boys and Josh decided they were going to ride their bikes around. Jake came and asked if he could ride his bike as well, but unfortunately we could not allow this. With his immune system being low as well as hi platelet counts being low, we could not risk an accident on his bike. For most boys, scraped knees are simply signs of an active childhood. For Jake, a scraped knee could be the predecessor for admittance to the hospital. When the boys found out that Jake was unable to ride his bike, they chose to go put theirs away and just play football instead so that Jake could play with them. It was a wonderful site to see and the attitude those kids possessed was to be commended. Jake had a great time getting some fresh air, playing with friends, and giving his body a chance to get some well needed exercise.

Monday morning he will make another trip to the clinic for blood tests. With his counts being low, the doctors are trying to keep a close eye on them to make sure he is remaining as healthy as possible. They will use tomorrows results as a determining factor for whether or not to give him another transfusion. If the counts are anything like we have seen the last few days, we are expecting another all-day visit to the clinic to get some healthy blood pumped into his system.

Jake is a little naive with this process. We asked him if it felt weird having someone elses blood in his system. He said, "It's not from a person silly, it's from the hospital." Oh to be young again.

Transfusion Tuesday

2008-11-10T17:56:00.002-07:00

We went in for counts last Friday and then again today and Jake's ANC is down in the 200's. This is incredibly low and puts him at a bery high risk of contracting a virus or an infection. His blood counts as well as his blood volume is low, so it was tough for them to draw blood today. He has the bruises to prove it.

Tuesday morning we have an appointment at the hospital so Jake can receive a transfusion. We are not sure how many pints they are planning on giving him, but the hope is that the transfusion will help give his system enough of a boost to help it through the next week or so. He is finishing up the last few weeks of this phase of his treatment, and we are just waiting for his body to recover from the last round of chemotherapy. Once he begins to rebound, we will be able to start planning for him to return to school and catch up with all of his friends.

Treatment Update

2008-11-04T22:32:00.004-07:00

We made another visit to the clinic today for some treatment.

Jake's counts were low, around 400. This was a little bit of a surprise, but we had moved his treatment up just in case they had dipped this low. He received a chemo treatment today and we will have to give him 2 more at-home shots over the next couple of nights.

The Dr. is happy with the progress he is making. Just to be safe, they have scheduled a blood transfusion for Monday in case we run into any problems between now and then. They are expecting that his counts may drop even further over the next few days so they have started him on some antibiotics to make sure we start fighting off any potential infections.

Our next treatment will be on Tuesday(11/12). Things are going as planned to this point - if you can really "plan" for an of this. In talking with the Dr. today - she is thinking that he will be ready to return to his classroom before Winter Break. Now, I know that there are some incredible people from his school who check in on his status. I am not trying to get anyone's hopes up or to have any plans made for an expected return date. As with most things through this entire process, the further into the treatment we get the clearer the next steps will become. Continue to keep Jake in you thoughts and prayers. He is doing good with the treatment as well as the limited side effects, but I think he really misses his friends from school and just being able to do "normal" things that kids do.

Interesting comparison....

2008-11-04T22:16:00.005-07:00

I have been watching Jake go through some pretty major physical changes over the last few weeks of treatment. This portion of his treatment has required him to take a good size dose of steroids. It started high, but has been tapering off over the last few days. When we were in the clinic 3 weeks ago there was a professional photographer who was there to take some pictures for a website that is being put together. Last Wednesday we received a copy of photos they had for Jake. These photos were taken prior to the latest steroid treatment. I didn't use the actual photos because I was unsure whether they were any copyright issues. But I did have a photo of him taken early in Oct that works just as well.

I was amazed at how much his body had changed after only 3 weeks of steroids. Call me a cynic, but when I compared the photos there was only one thing that came to mind.

Barry Bonds then vs. now
Jake then vs. now

I am not making accusations.......just making a comparison.

Halloween 08

2008-11-02T08:51:00.004-07:00

Joshua was the manager for the Boston Red Sox's

Checking baseball stats

Writing his roster

Getting excited to go trick or treating

Being Silly

Peace Out

Focus on the pumpkin

STOP taking pictures of me (roid rage)

Mom was worried that the cheeks wouldn't fit

Working his Batman skills

Jake's favorite sword at the ready

Glow in the dark stickers for
Trick or Treating

How Low Can you Go?!?

2008-10-18T22:49:00.002-06:00

I have had the blessing (occasionally the curse) of growing up with a Father who loves music. Blues, Jazz, 50's & 60's Rock and some other styles that I have blocked out. I am pretty sure that music is the source for the very deep voice in my head that is now chanting, "How low can you go?" I am not sure if the song referred to the twist or the limbo, I can't remember any other portion of the song, but as I move through my day, my mind is cycling that phrase over and over.

For me, it references how low will Jake's blood counts go. Last Tuesday he completed his 3rd and final doxorubicin treatment and is currently taking his last week (I think) of high dose steroids. His ANC had lowered to the 800's as of Tuesday and is on the way down. It is very possible that it will go all the way down to 0 (very similar to our first month of chemo after the hospital). We have been given the official word from Jacobs Oncologist that our status has been changed to 'lock down'. For Jake that means no more church, stores, play dates for a couple weeks, and for the family it means a heightened vigilance to kill germs and avoid them as much as possible. Jake's immune system is low enough that an encounter with any type of sickness or infection will send him to the hospital.

I would again ask for all of our friends and family to pray for Jacob. This phase of chemotherapy is critical to moving past remission and towards cure.

Pray for Jacob's total healing.
Pray for protection from sickness and infection.
Pray that his spirits would stay high (This has been particularly challenging right now. The emotional roller coaster of a kid on steroids puts PMS and menopause in the kids zone.)
Pray for the rest of us - patience, wisdom, patience and patience

Daily I am reminded that only with Gods presence and the loving support of the amazing people in our life are we making it through this journey with any degree of success. I was reading over some earlier blog posts and was again blown away by the love and support that you have given us.

Over and Over and Over you have been there for us.

Thank You!

Duckbill Platypus

2008-10-15T13:00:00.007-06:00

This is Jacob's 3rd grade oral report on the Duckbill Platypus. Since we are working at home with a tutor during this phase of chemo we decided to share it with his class via blogging technology.

Enjoy!

Kicked out of Man Zone!

2008-10-12T11:53:00.004-06:00

The sub title for this post would be - Why I adore Sundays!

Lets start with my husband waking me up - gently - with sweet words.

"It's almost 11. I think that would be a good wake up time."

(For anyone out there who is not married, my advise is to be patient and marry up, like I did! It pays such wealthy dividends for the rest of your life. Brian is the best thing to happen to me, ever!)

When I finally crawled out of bed and made it downstairs it was to discover that the kitchen disaster of Saturday evening (spaghetti and meatballs) was all cleaned up, the dishwasher ran, famous Carlson Chicken Chili was already simmering in the crock pot and Taquitos (football fare requested by the junior men) were cooking in the oven.

Then, my boys inform me that I can't be downstairs today - it is the Man Zone!

"You know Mom - guy stuff!"

Football on the TV, snacks in the oven, Nintendo in the grubby little hands of my boys. They had definitely taken over the lower level of the townhouse. And they were very firm in telling me that I would need to be upstairs for the day.

Here is the secret. SHHHHH

I love being banished to the upstairs once a week. HGTV on in the office, a great cup of coffee (also prepared by my honey!) Sunday newspaper and my laptop. In my comfy pj's and robe, slippers on my feet - it is ALL good.

Cherry Creek School District ROCKS!

2008-10-02T12:45:00.002-06:00

I am loving me some Cherry Creek right now!

Today is our first day participating in their Home/Hospital Program and I am very thankful to have access to this wonderful opportunity. During this phase of chemotherapy Jacob's immune system will be very compromised, preventing him from attending class at Red Hawk Ridge. Through this program Jacob will have a tutor (The amazing Mrs S!) come to the house for two hours each day and teach him what his class mates are studying at elementary school. Mrs S will follow the lesson plans of Jacob's 3rd grade teacher, Mrs Erickson, and Jake's work will actually be submitted to Mrs Erickson. What this means is that when we are healthy enough to go back to school - Jacob will be right on track, Mrs Erickson will know right where he is at and reintegration will be very minimal. That is an amazing thing for a 8 year old.

I have to admit, I had gotten rather stressed trying to figure out the best way to blend school and chemo during this phase. It was a hard decision to keep Jacob out of the classroom(Jacob loves school, his teacher and his class), but it was essential for his health. This program has completely removed all fear and trepidation about his schooling.

Thank You to everyone who has helped set this up - and who is working with us. You are making the journey so much easier.

To All the 3rd graders in Mrs Erickson's class, Jacob got your letters and has been reading them with Mrs S. In my book, you are the most awesome 3rd graders in the world!

Not for the squemish

2008-09-30T22:15:00.000-06:00

Yesterday was a long day.

With hopes of high numbers we were off and running to Centennial Medical Plaza to be there when the lab opened at 7am. Yep me and both boys were up in the early AM, an arena of the day we do not function very well in.

Then it was back home to feed the boys and get Joshua off to school.

Once we had Josh off to pursue his education, Jacob and I headed to the church to start the Crock Pot Beef Fajitas. This recipe and all the prepped food was from Delectable Dinners - if your schedule gets crazy and you still want to feed your family (or your Alpha group) a great, healthy, delicious meal - then you need to check out Delectable Dinners! Thanks Dawn.

Next it was back home to squeeze in a much needed shower before calling the clinic to see if our numbers were high enough to start back on chemotherapy. As I spoke with Grace (one of the many awesome woman at the oncology office) on the phone, I learned that his numbers were to low to start chemo and that the white blood cells had been suppressed long enough that we needed a bone marrow sample to verify exactly what was going on. The hope was the marrow would verify that it was simply his immune system taking a while to recover after a viral infection. The fear was that the marrow could be again making Leukemia cells.

So as I dragged a comb through my dripping hair (good thing I am not a high maintenance girl) I raced down stairs to give Jacob the Valium and the Emla cream that would help to mitigate the pain. We have done bone marrow biopsies before - in day surgery under general anesthesia - but never in the clinic and never in my presence. This is the exact reason I am so thankful that many of you are praying for Jacob on a daily basis - yesterday we needed to be before the Father.

Arriving at the clinic we went through the normal start up procedures - access the port, do CBC, receive a nice amount of fentanyl - and then get ready for the bone marrow biopsy. Done in the clinic it is very similar to a spinal tap, they insert a needle into the vertebrae to access the bone marrow. There is a local given prior to the biopsy to help manage the pain. The pictures below show what the procedure looks like.

Jacob did amazing as the Doctors and Nurses worked around him, holding still and giving them the perfect field to work in. As the pain grew he would say through his tears, "Squeeze harder! Momma, Squeeze harder!" Once the needle was placed there were several looks back and forth between Dr Odom and the nurses, because even though the needle was placed properly there was no bone marrow coming out. Some times the marrow is so packed that it can not come out of the small needle. Unfortunately - the picture below shows what the next options is.

When they can not get marrow from the vertebrae, they have to go to a larger needle and the hip bone. When I say bigger - think the tine on a fork. This is usually done under sedation and Dr Odom said that it has never been done on a child as young as Jake with only a local. In his own words it was the most painful thing we have went through and is probably the hardest thing I have ever done. This time they had Jacob lay on his side and bring his legs up towards his chest. First was an additional dose of Fentanyl and the administration of more Lidocaine as a local. Then Jacob and I held hands. HARD!

Part way into placing the needle the pain was bad enough they had to stop and administer more local and even after that the pain was ...

intense
Severe
10.5 on a scale of 1-10
unbearable

And again, Jacob stayed perfectly still as they placed the needle in the bone. Superhero is an understatement.

Jacob and I held hands hard enough that minutes after the biopsy he still had my fingerprints on his hand.

Words really can not describe how painful it was for Jacob - or how hard it was for my Momma's heart. There is a reason parents are not allowed into surgery. I must say again how awesome our entire medical team is. Dr Odom, Susan and Shay took an incredibly challenging situation and walked us through it with amazing skill, ability and compassion. 6 months ago - you would never be able to convince me that we would survive that situation. Yesterday - I think we made it through with flying colors.

Yesterday evening Grace called with the preliminary pathology and the bone marrow showed a suppressed immune system but no Leukemia cells. This is the information that not only helped us to sleep last night, but that we had been praying for. GOD IS FAITHFUL!!!

Today was also a long day. But not near as hard.

We started the delayed intensification stage of chemotherapy. Jacob had his first dose of Doxorubicin (3 hour IV chemotherapy) today and we are praying for no complications and little side effects. Today is day one of 56. I am sure there will be a variety of ups and downs but we are going to hold onto the promises of God as we walk it out.

Please, continue to pray for Jake.

Today, we made the donuts!

Quick Update

2008-09-26T20:13:00.002-06:00

Counts today were down to 650ish. We will go in for another blood test on Monday to see if tings have improved enough.

Here is some good news to go along with this constant delaying.......
Based on the counts of some of his particular cells (red blood cells, platelets, etc..) Jake's Dr. does not feel that the low counts are any signs that the Leukemia cells are making a reappearance. They are still confident that this is the latter end of the virus and since his immune system has been weak it is just taking longer to recover fully. In discussions with the folks at the clinic, this is a pretty common thing to have to deal with - delays in treatment phases because of low counts.

So, although we deal with the emotional roller coaster each day as well as making sure that we have an alternate schedule for each of us days of possible treatment, we are really OK with all the delays. Don't get me wrong, I would love to get this phase started so that we can be through with it that much sooner. But thanks to many of your comments, you have helped us to remember that God does not always work on our time lines. He has a reason and His timing will be perfect. Thanks for the encouragement and for being there for us to help pick us back up.

Ecclesiastes 4:10
For if either of them falls, the one will lift up his companion. But woe to the one who falls when there is not another to lift him up.

Remember Vinyl Records?

2008-09-24T11:14:00.002-06:00

Some of you may have had these when you were younger. I loved the sound of the pops and clicks that you could hear while listening to your favorite album.

I think the part I loved the most when listening to them was when you had a record that had gotten a small scratch on it you would get to hear the record skipping. It would always sound like this:

Treatment is delayed......
Treatment is delayed.....
Treatment is delayed......
Treatment is delayed.....

Yep, that is what we are feeling like - a broken record.

Today's counts were up from Monday, but they were only at 700. We will try again on Friday to check to see if the counts have improved.

Thanks to everyone for your prayers and your support!!!!!

Dunkin Donuts

2008-09-23T08:05:00.002-06:00

Mmmmm.... just typing Dunkin' Donuts makes me crave an old fashioned donut and a great cup of coffee. I don't think there are any in my area, so for now I will continue sipping my green tea and dream about that wonderful taste.

The reason Dunkin' Donuts is on my mind will definitely date me - but do you remember their commercial from - oh...decades ago where the guy goes back and forth making the donuts?

It's time to make the donuts
I made the donuts

It's time to make the donuts
I made the donuts

It's time to make the donuts
I made the donuts

He goes in... he goes home.

I have felt a lot like the donut maker the last two weeks. To be honest, it is making me feel as tired as good old Fred looked at the end of the spot.

It's time to start the treatment
Delay the treatment

It's time to start the treatment
Delay the treatment

It's time to start the treatment
Delay the treatment

We go in... we come home

Yesterday, I thought for sure we were going to be able to say, "We made the donuts!"

but no.

Please do not misunderstand. We have the very best medical team possible and I am so thankful that they are giving Jake amazing care and waiting for the right time to start this next chemotherapy phase.

Of even more importance - Our God has PERFECT timing. Several good friends have helped me remember that, thank you. God will allow the treatment to start at the right time, when it will be safest and most effective in healing our son.

And so we wait... and maybe try and find a good donut.

Very blessed! and very stuffed...

2008-09-19T19:59:00.004-06:00

Today we were totally spoiled by one of Jacob's classmates, Payton (with more then a little help from her Mom, DeAnna).

Jake has missed a week and a half of school now and Payton is one of the kids in his class that has been very concerned. Today they brought us a meal and bags of goodies to help us during this season of waiting. The chicken was so good and the Mac N Cheese was extraordinary. I thought Brian's plate was going to break under the mountainous serving he put on his plate! The boys are playing with the speed racer car even as I am typing this post.

Included amongst all the treats was this dessert cookie which sums up what we are all feeling right now...

Payton and DeAnna
Thank you so much for the meal and all of the wonderful goodies!

Postponed.....again

2008-09-19T17:39:00.004-06:00

Today's treatment was postponed due to the lingering virus that Jake has in his system.
In meeting with the Dr., she felt there was still enough congestion in his lungs and sinuses that it was best to wait a little longer.

The next phase of treatment is most successful when it is done in a continuous window. The last thing we want to do is to start the treatment and then have the virus still be in his system and have it ramp back up again once his immune system is compromised. The risks at that point are much higher and the success rate of the treatment will be lessened. Because of this we have an appt. Monday afternoon with the Dr to take another look. We will call in the morning and give her the update on where Jake is compared to today. If she feels there is a good chance we can start, we will go into the clinic and have them run the CBC to make sure his blood counts agree with her assessment as well.

Here's praying for a quiet weekend and for some of Tanya's homemade chicken noodle soup!!!!!

A few of my favorite vacation shots

2008-09-18T20:21:00.006-06:00

Anoka Aquatics Center

With Grandpa at the fair

The boys on the car ride up to the lake. The cavalier is so cozy!

Fishing of the dock on Leech Lake

Showing good form during the canoe races.

Winners of the canoe race enjoying their victory

Joshua enjoying his time on the lake.

Jake taking full advantage of his swim day

Battling on Rock Band

First night of fishing. Nice Bass!

Checking out the nights catch.

Hi!

Good Looking Cousins!

My sweet Allissa Mae

Brian catching some air off of the slide.

Head first

Dylan enjoying some down time

Coolest Grandma Ever!!!

Aunt Jenny goes flying

Jacob and Cody fighting each other during pirate battles

Jacob, Cole, Cody and Joshua

End of the day - at the bonfire

Logan wearing smores and dirt

New Game Plan

2008-09-17T15:39:00.002-06:00

The good news is that both boys are feeling much better and moving on towards good health. The bad news is that I have tissue stuck in both nostrils as I type this update. I hate being sick!!!

Now that Jacob is feeling better we are rescheduled to start Delayed Intensification on Friday the 19th. During this phase we will be introducing a new chemotherapy agent so please pray that Jacob tolerates the medicines well with little side effects. On Monday he will be back at the office to receive a double shot of asparaginase - and while that sounds like a nice coffee break - it is really two large intramuscular injections. I tried to encourage Jacob that they do numb the legs with Emla to help out with the pain and he thought we should talk to Dr Odom about using Valium. What a weird little world we live in.

Check back for more updates.

waiting for whats next

2008-09-16T08:35:00.004-06:00

I am starting to think that waiting is far more exhausting then doing. Anyone else ever feel that way?

I am basing this on the fact that I feel far more exhausted then I have for... (OK - not forever - which is what I was going to put) but for a long time.

Wrung out
drained
stretched thin
empty
bushed
depleted
fatigued
sleepy
tuckered
weary
pooped

It must take a lot of energy to do nothing. (OK - again trying to stay truthful - not nothing. But, also, not a whole lot of something.)

I think the exhaustion is magnified by uncertainty. Jake's chemo has been delayed due to low numbers at his visit last Wednesday. It is kinda funny to have the blood work and numbers before the symptoms, but the soar throat, cough and massive amount of snot soon backed up the numbers. Joshua decided to join in making it a family adventure.

Sunday evening Jacob spiked a fever sending us to the ER for blood work and cultures and a chest film. Following IV antibiotics we were back home to the waiting game. Jacob is starting to feel better and we will check in with Dr Odom to find out when we can be back on track. We will try and keep you posted

Delaying Delayed Intensification

2008-09-10T21:15:00.004-06:00

Jacob was to have started the next phase of chemotherapy today but we had a very minor (please read - minor - nothing to lose sleep over) bump in the road.

First, let me explain what this next phase looks like. Delayed Intensification is the last phase before reaching maintenance and will consist of two cycles of chemotherapy that will each last about a month. This will be a major assault on any remaining Leukemia cells that are in Jacob's body and as such will involve higher doses of a larger variety of chemotherapy agents, very similar to what we went through the first month with induction. Jake will have oral, intrathecal (spinal), IV push, IV fluid and intramuscular chemotherapy over the next two months. WOW! Just typing it is more then a little bit overwhelming.

Along with direct side effects from the chemo (the main ones we had before being moon face and weight gain from the steroids, possible hair loss, aches and pains in the muscles and nerves, and loss of energy) we will also see Jacob's immune system be severely compromised. Once we start the chemo load Jake's numbers will start to drop and somewhere around 2-3 weeks he will need to be home to help protect him from infection. It usually then takes another 2-3 weeks for his blood and body to rebound back to normal numbers which would be the end of the 1st cycle and we will then do that one more time. This means we will be in and out of school for the fall - we are so fortunate to have an amazing teacher for Jake and an entire school and staff that is supporting us.

So back to the bump in the road. When we got to the clinic - Jacob's CBC came back with an ANC of 610 which is too low to start the next phase of treatment. This is not related to the actual Leukemia. All other blood work shows that things are progressing really well. Dr Odom feels that it is due to his body fighting off illness / infection. With the chemo, any time his immune system is called upon it causes numbers to take a drastic dip. To compensate, we are delaying the start of the new treatment, suspending his current chemo meds to allow his body a chance to rebound and hoping to start back next week.

While we were unable to start the full regiment of treatment - Jacob did have doses of IV chemo in addition to a spinal tap. I did not realize that was on the agenda for the day so this was our worst tap to date. Valuim, which is a key ingredient to them going well was absent and the numbing cream was not as effective so Jacob felt the tap. My baby felt the spinal tap. And my wonderfully brave little boy, with the smallest voicing of ouch, simply held still with a tear going down his cheek so that the Dr could finish. Children rebound quickly and he was soon moving on to Doritos and Nintendo. My heart has not moved on so quickly and my tears were not limited to one. Today was one of the hard days.

To end on a happier note - here is my favorite video from vacation. It shows just one of the many areas that my son is becoming brave and courageous in. While we are not sure what illness Jake is fighting right now, after seeing this video - Dr Odom would not rule this out :)

I will try and get more vacation photo's up soon. Enjoy this for now.

Wii would like to say Thank You!!!

2008-08-24T13:50:00.002-06:00

WOW! Life got a little crazy and all of a sudden I am two weeks behind on our updates. In a nut shell - we are all doing fabulous and are completely enjoying our Minnesota Vacation. I have some fun stories and pictures to share, hopefully soon, but first I have to tell you about a group of people who have left us awed and speechless.

We have some wonderful friends, Nicole and Raul, who are moving to Puerto Rico and a couple of weeks ago we planned a last hurrah for our families. At their swimming pool we had the opportunity to meet some families from the neighborhood. Even with our friends preparing for their move we were so happy that they had found such a wonderful community of people to live next to for the last two years. After the pool we headed to the house of one of the neighbors to do some backyard barbecuing and, again, Brian and I commented on house nice and friendly the neighbors were that we were meeting. Dinner was amazing - even fighting the gusting wind that tried hard to steal our plates of food and wrestled with our napkins - it was fun to enjoy our friends and get to know some new people.

At the end of dinner, Nicole came outside carrying a big gift bag, and said that they (our friends and their neighbors) had a gift to help Jacob and Joshua during the next weeks and months. Imagine my boys delight and our utter...shock? Awe? Amazement? As the boys opened the present to find a Wii Sport and the Wii Play packed inside.

I am not often speechless. But there are really no words (especially in the moment) to describe what we felt as people we have never met or spent time with took time, energy, caring & money from their own life and gifted it to my boys and our family.

So to our friends

Raul, Nicole, Matthew and Michael

And their Amazing friends

Tracy, Tamara & Gregory
Chris & Emil
Karen
Adam & Jennifer
Mike, Lori & Mikey

From the bottom of our hearts - Thank You for living a life that reaches out and shows caring and for the very generous gift.

cancellation

2008-08-13T22:50:00.002-06:00

Just a quick note - We will not be going to H20Brien Pool tomorrow (Thursday). The boys are fighting off a summer cold and we need to get them both over that!

I have lots of other updates - check back in tomorrow.

Change the date

2008-08-06T09:09:00.002-06:00

So...

I just took a peek at the weather forecast for tomorrow and it is not looking promising for a pool play date. Probably I should have checked that first but hopefully there is truth in the saying - better late then never.

With that in mind - the boys and I are going to change our plans and we will be going next Thursday, August 14th at 10am.

Hopefully the added benefit of this is more friends will be able to join us!

You are invited!!!

2008-08-05T19:24:00.003-06:00

On Thursday the boys and I will be going toH2O'Brien Pool in Parker for some end of the summer fun. Our plan is to get there around 10am and play until the boys are exhausted. If you are looking to fill a couple hours with family fun - we would love to have you join us there!

Hope to see you there!

2008-08-04T23:01:00.005-06:00

It has been pointed out to us, by several wonderful friends, that we are very tardy with an update.

My husband is even now taunting me for "caving in" and was plotting ways to make it my turn to blog.

You see - it is not that we don't want to blog. This has been an amazing, wonderful and helpful outlet. In truth, we have just been really enjoying the normalcy of the last few weeks. Hot summer days, swimming, work and play, laziness, friends, watching movies, playing games, even just hanging out on the couch. Jacob has been feeling great and we are enjoying that blessing as much as possible.

I

If a picture is worth 1000 words - You are now caught up with the Carlsons!

Phase 3

2008-07-18T08:06:00.003-06:00

Jacob's journey is moving on into phase 3 chemotherapy today - interim maintenance.

We had a slight speed bump in getting here, Jacob caught a virus last weekend and Dr Odom wanted to give him time to recover from that before starting back on the daily chemo. He is much better and as of last night he is back on the meds.

Interim maintenance will last for two months and consists of high amounts of oral chemotherapy and fewer clinic visits. Nightly doses of 6MP will continue and we are adding in a new oral agent, Methotrexate, which he will take once a week. The Methotrexate he has had previously in the liquid form via his spinal tap. In addition to this he will be back on the steroids for 5 day windows through out this phase. We are only scheduled to go to the clinic once (halfway through) this phase for a spinal tap. We are used to going every week so it was weird when we left on Tuesday to say "Have a nice month!" All of the ladies at the clinic hold such a special place in our hearts and we have gotten used to seeing them every week - they have been a definite perk in all of this.

The really cool thing about this phase is it allows for us to go ahead with Minnesota vacation plans. We leave in 28 days! At this point the only medical thing we are expecting to do while on vacation is a blood draw to get a CBC. You have no idea how huge that is. What a great window to rest and enjoy friends and family and to celebrate the wonderful life we have been given.

Once we return from Vacation we will be starting school and then in the middle of September we will start phase 4 - delayed intensification. For two months we will have, well, intense amounts of chemotherapy. I do not know the details yet but the Doctor mentioned that it will look a lot like induction did - numbers down to 0, dietary limits, isolation (he will miss some school), and very likely a re hospitalization.

We did not know we were doing this round until last week and it was very sobering. Jacob has been doing so well and with next to no side effects it has been hard to even think of him as being sick. In my mind I had us all the way to maintenance and cure. In my heart I think that is where God is taking us - this is just a reminder to walk the journey step by step. It has also been a reminder that for now my plate is already full in just taking care of my family - and that is where my focus needs to be. How lucky I am to be able to do that full time!

The smell of burning ...

2008-07-16T19:30:00.002-06:00

The smell of burning hair is one of the worst smells there is.

Tonight we were doing our job as good Americans and getting ready to throw some beef on the grill. Brian had already fired up the grill and in answer to his wifes request - went out to give it a quick brush cleaning. Lifting the lid and not seeing any flame he automatically reached out and pushed the starter button.

Think ENORMOUS fireball.

And as bad as the smell of burnt hair is (eyebrows, lashes, hair) it is so much better then the smell of burnt flesh, which by all rights should of had us doing more then applying a little aloe.

You may call it luck... But I would like to say "Thank You God!" for protecting my husband tonight.

Fun Day Cancelled

2008-07-15T23:16:00.002-06:00

Today at Jake's appointment, the Dr. suggested it was best that we put our trip to Elich on hold.

One of the things I forgot to add to the last post was that over the weekend Jake ran into some issues. He appears to have contracted a virus of some sort as Saturday he spent most of the morning dealing with a stuffed up head and plenty of vomiting. The Dr. provided an anti-nausea prescription that worked wonders. He was back to his chipper self in no time at all.

At the clinic today, he is struggling with some congestion and a runny nose. With the changes we are looking at making to his treatment, there was some concern that there may be some issued with the virus that he is fighting. Because of this, the Dr. postponed the start of the treatment for a couple of days to give his body a chance to rid itself of this "crud". She also asked that he not do any swimming for the next couple of days to help give his body the best chance to be able to handle the new treatment. She also said that it would be best to not spend all day out in the sun, getting exhausted; as this would just delay the time that it would take his body to fight off the virus.

As we have said from the beginning, we have the BEST doctors caring for him. Because we respect them so much and they have been incredibly honest and straightforward with us from the beginning, it would be foolish for us to not heed their suggestions.

His counts from the blood tests looked good today.

ANC Count was 1950
Platelet levels were back to a normal level
Cell counts were all in the zone that they need them to be in order for the chemo to be effective.

Changes in Treatment

2008-07-14T20:17:00.003-06:00

Tomorrow is the the final Dr's. visit for a couple of weeks. Jake will be getting an IV push of some chemo treatment as well as some blood drawn for testing. After tomorrow, we will be starting the next phase of treatment. Consolidation is the title of this next phase. The purpose of this phase is to kill off any of the leukemia cells that may be hiding. The medications that he will be receiving will likely be the same as the ones he has been taking for the last couple of months. The biggest difference will be the schedule of these meds. They will be adjusting the doses of these so that he receives some of the meds for 1-5 day stints a couple of times throughout this stage. This stage typically lasts 1-3 months.

In talking with the doctor last week, it sounds like they are going to want to have Jake go through another phase of induction in the fall. This will likely come just after school starts for him. We have not talked about this with him yet, mainly because I am not sure we truly understand what that will entail for him.

Because of the changes coming up in his treatment, the Dr is expecting his immunity to take a dip again. To help make sure we don't miss our chance, we are all going to Elich Gardens. For those of you out in MN, it is the equivalent of Valley Fair. The library that the boys go to had an incentive plan where if a child read 12 hours, they could submit a completed form to receive a ticket for free admission. Since we may not be healthy enough to get their later this year, we felt it was best to sneak our trip in now.

We'll try and post some stats from tomorrow.

Join Us

2008-07-11T10:32:00.002-06:00

We have been so fortunate in all of the friends, family and even strangers who have rallied around our family and prayed for our Jacob. We would like you to join us today in extending that prayer for a special boy named Dominic.

Our good friend Kathy McShane has been sharing with us about 6 year old Dominic who has been walking the battle lines with leukemia for a lot longer then we have. Today (12:30 California time) Dominic will be having a bone marrow transplant. Please pray that God will be with the medical team, Dominic, the donor and the families of all. Also, please pray that this will be starting point of God's healing in his little body.

Thank you for sharing your love and prayers to help cover this little guy as well!

Birthday Pictures

2008-07-07T21:49:00.007-06:00

Yeah for Valium and Go God!!!

2008-06-30T16:36:00.003-06:00

So - in case anyone is keeping score

Philippians's - 1
Worry - 0

The visit with Doctor Odom (again!) went just amazingly well. Thank you so much for those of you who were and are praying for us.

Before we left the house Jacob took his Valium and we applied his emla (numbing) cream to both his port and the site where they will preform the tap. He is now healing so fast that I could not see the puncture from last week. This is really good news but it does make it harder to try and numb the right spot. That is probably why I tried to squeeze as much as possible under the tegaderm band aid to make sure we would have as little pain as possible. Of course, the side effect of that is once there is pressure on his back (ie. sitting in the car for the drive) the pressure made it kinda explode everywhere. Thank goodness for the travel bag and extra clothes that Brian put in the car.

Jacob was a total stud! Because of the emla explosion - Jacob's back was not as totally numb as we had hoped for and he did have some pain with the spinal tap. Even with the pain he stayed perfectly calm and in the perfect posture for the Dr to make the puncture. I know all the adults reading this understand how hard that would be for any of us - let alone for an 8 year old.

Joshua also deserves some all star recognition. As a child who craves the lime light he totally got that this morning was about his brother. He was soft spoken (yes, Joshua!) thoughtful and really focused on his brother. Josh prayed over our celebration pancakes at Ihop and it was so sweat as he thanked God for "giving Jacob a good day at the clinic and treatment to make him better".

Our lives are falling back towards "normal" patterns and I am so thankful for every window we get to see God in our lives. To know that He is, and that He is active and available is the normal we want to stay in.

anxious

2008-06-30T06:58:00.002-06:00

I am feeling a little anxious this morning - it is my turn to take Jake in for his spinal tap.

Brian had only encouraging things to say after the last visit - about how good Jacob did - but I guess I am worried about how good I will do. Needles and I have a long history including but not limited to me passing out. It has been a long time since having a blood draw put me on the floor - but needless to say my goal would be to help and support Jake today, not to have to be taken from the room.

Did I mention Joshua will be coming with us? Again, I am asking why Valium was not prescribed for all family members involved? I have these horrible images of him being silly (as he is wont to do on occasion) as the Dr is placing the tap. It looks a little like an episode of the 3 Stooges visit the Dr - only Jake is the one who ends up on the receiving end of all the ouches.

The other thought circling through my brain this morning (in the voice of Jim Ladd) is the verse in Philippians that says "worry about nothing - pray about everything. I am much more practiced in worry - but today I will choose to pray. For anyone out there who will be speaking to Jesus today - please add our names to that conversation.

Birthday Weekend

2008-06-29T21:52:00.002-06:00

This weekend, we celebrated Jake's 8th Birthday party (pictures to come soon).

We were blessed to share it with some good friends at the pool in our complex. All of the kids seemed to have a great time swimming and playing with each other. Jake confessed to us later that he had an awesome time.

It was a day that most kids look forward to every year. For Jake, this was an especially exciting day. When we started on this journey in mid-May, none of us knew what to expect. Within a few days of starting his treatment and being told all of the things that he would be unable to do for a period of time, Jake was concerned that he would be unable to have a birthday party. As he started making good progress with his treatment, his concern moved towards whether or not his hair would all be gone by his birthday.

I think back to Birthday's that I have had in the past and it is impossible to think of any of them where my wishes were anywhere near Jake's were. Mine were filled with desires for baseball gloves, games, and good times. Never in wildest dreams would my wishes have been to not lose all my hair or to even be healthy enough to have a party.

Jake has been forced to grow-up much faster than anyone deserves. Although his party was for his 8th birthday, he has lived through more pain and stress than any child should ever have to endure. His treatment and his bodies response to the treatment has been better than anyone could have ever expected, but that does not make it any easier to walk with him though this.

I look forward to celebrating more birthdays with Jake, as well as celebrating a very special "birth"day - the day that the doctors determine that he has been cured of his leukemia and he can begin living his life with no longer having to be concerned about the future, but getting to look back at what he has come through.

It may be a number of years before the impact of all of this will be absorbed by Jake, but when it all sinks in for him he is going to have some incredible memories of family and friends.

Happy Birthday Jake!!!!!

Long Weekend

2008-06-23T23:15:00.012-06:00

This last weekend was both long in time as well as long overdue for the Carlson Family.

We had 2 of our closest friends from MN, Mike and Tiffany Krueger, drive out from MN to spend a couple of days with us. It was incredibly relaxing for us to have them in town. We quickly realized how much we truly do miss them.

On Thursday night, we all took in a Rockies game.

As you can see, it took a lot out of the boys as they caught a snooze as we rode the light rail home.

On Saturday we headed out to Estes Park to spend some time hiking and sharing the scenery with our visitors. We hiked up to Alberta Falls and got a chance to get some fresh air.

Sunday, our friends drove back home to MN. It was sad to see them go, but we will be seeing them again in August when we take our trip to MN for our summer vacation.

Sunday and Monday were filled with recovery. Jake did awesome on the hike on Saturday, but his feet and legs took a beating and he was ready for some time to relax and give those muscles a little break. We did some swimming late Monday afternoon and he swam like a fish. It is great to see him not only getting out and doing things, but doing seeing him do things at a level that he was accustomed to a couple of months ago.

Today we also received a gift from the Minnesota Twins called a "Smile Box". The box contained a hand-written card from the Twins along with a number of Twins items: A hat, a Delmon Young autographed baseball, some Twins player magnets, a bobblehead doll, a couple of books on the history of the Twins, and a Joe Mauer fishing lure. Jake talked at great length about all of the fish that he plans on catching with this lure.

Thanks to Rick and Diane for taking the time to get this for Jake.

It still amazes me at the lengths that friends and family have gone to in order to help Jacob know that there are people out there who are thinking about him and praying for him.

As we continue to save all of the emails and all of the cards and all of the blog postings/comments, we look forward to the day when Jake can finally look back at everything he has been through and he will have an amazing story to tell. At 7, it's difficult to truly understand all that he is having to deal with and the seriousness of his illness. He is being forced to grow up a little quicker in certain areas right now. With a birthday coming up next week, it is encouraging to start to see the almost 8 year old in him start to come out and to watch him slowly start to become that "kid" that he was a few months ago.

I have said it many times - Jake, you truly are MY Hero!!!!

2008-06-20T13:07:00.002-06:00

Clinic Visit Update....

I took Jake in this morning for his spinal tap. Things went really, really good.

To prepare for this procedure, Jake took a Valium with breakfast (oh how we all wish we could start our day like this) and we also put some numbing cream on the area of his back where they would be performing the procedure. We got to the Dr and they took some blood so they could get his counts taken care of. Once they had taken the blood, they gave him some additional pain medication to help him out.

The spinal tap was all done right there in the Dr's office. Jake held a rolled up blanket on his lap and used it to brace his body while he hunched over. The whole procedure then took about 6-10 minutes while they drained some spinal fluid and then gave him his Chemo. Once they were done, he needed to lay down for about 1/2 hour to let the medicine work its way around his spinal column.

Blood counts were great - ANC Count of 2130. His platelet count was over 560,000 and his white blood counts were in the normal range. His red blood cell counts are still a little low, but the Dr said this is normal as the bone marrow begins to work its way back to normal cell processing.

Next appointment is scheduled for 6/30.

Friday Updates

2008-06-16T19:48:00.003-06:00

First of all, let me clarify, I know that today is not Friday. I am rather behind because I indulged in a lazy wonderful weekend with my guys. Brian promised an update on Friday - so here it is - (on Monday)

On Friday Jacob had what should be his last surgery for awhile. The results of his bone marrow biopsy showed no leukemia cells and that puts us officially into remission. His blood work backed that up, his ANC is up to 2460 which means his immune system is up and functioning and he is creating wonderful, healthy blood.

We now start the second phase of chemotherapy which is called consolidation. Consolidation will last for a month and consist of daily oral chemotherapy and weekly spinal taps to give chemo intrathecally. The process for the spinal tap is Jacob will sit on our lap, facing us - with a pillow in between us - we hug and the Dr does the spinal tap. Which means that Brian and I will get a picture perfect view of the ongoings. Yikes! We will have the first go round this Friday so please pray for us and the Dr that all goes well. They have instructed us to give a Valium before the appointment - I should have asked if that applied to the parent as well.

Saturday afternoon we went to the pool and it was wonderful. The water was warm, the sun shining and Jake and I were finally brave enough to go all the way into the pool, (we had been stair sitters the previous week due to cold water!) We even got Daddy to the pool - of course we brought him home a lil redder then we started off. I love summer. We plan on swimming as many days as possible and are looking for friends to join us. Call Me!

On Sunday - Brian's wish was to ... do nothing. Let me tell you, we can do nothing with the best of them and had a great day. Having a lock on the best Dad in the world for my boys makes it an easy day to celebrate even if the agenda is ... nothing.

Our day of nothing must have been exhausting for Jake because he stayed in bed till 11 o'clock this morning. There are just days that his body need lots of rest and today was one of them. I have not exactly figured out the rhythm or the pattern yet - it seems to vary. He did end his day, happily, snacking on a bowl of popcorn and giggling that he had the whole bowl to himself.

Word of the day.....

2008-06-13T18:37:00.005-06:00

Remission

re·mis·sion (rĭ-mĭsh'ən)
n.

The act of remitting.
A condition or period in which something is remitted.
A lessening of intensity or degree; abatement.
Medicine. Abatement or subsiding of the symptoms of a disease.
The period during which the symptoms of a disease abate or subside.
Release, as from a debt, penalty, or obligation.
Forgiveness; pardon.

I just received a call from the Dr. with the results of today's bone marrow biopsy. She thought since she had gotten the news so quickly, she would pass it onto us so that we could have some good news to start our weekend.

I will have Tanya post later all the other info she received from the Dr.'s visit today, but I know there are plenty of people who are checking regularly for status updates - especially on Fridays.

We hope you all enjoy your weekend as much as we will!!!

Summer Vacation

2008-06-10T19:06:00.003-06:00

It is official - Summer Vacation is here.

Or, as our littlest guitar hero would say, "School's Out for Summer!"

Before we get to far into summer I have to take some time and brag on Joshua. Last Friday we went to the end of the year assembly at Red Hawk Ridge Elementary School where Joshua received the High Flyer award. Each class selects one child that best displayed the SOAR characteristics.

Safety
Ownership
Attitude
Respect

After the ceremony Joshua received a booklet created by all of his classmates listing the reasons he was selected. Below are some of my favorites.

Congratulations Josh for all the hard wark you have ben dwoing all through the year. I am riley praod of you.

grajalashen josh you have ben chosen for the high flyer sum day.

der Joshua you shud be happy and like osum as a hi flier.

Congratulations Joshua! I'm proud that your a high flyer. I like the way you soar.

Brian and I completely agree with that last sentiment. It has been so awesome to see Joshua thrive in first grade, taking his energy and becoming a positive part of the classroom.

The decision to enroll the boys into public school was one that we wrestled with for a long time. Now, at the end of our first year, I can tell you that it was the right decision. It is also very clear that a key to this success is the teachers that worked with Jake and Josh.

Mrs Goodman, Mrs Von K, Mrs Green, Mr Gunnett and all of the staff at RHR - you are amazing. Thank You so much for a great year!

Tri Girls ROCK!!!

2008-06-09T08:48:00.002-06:00

Yesterday some of my Tri girls took their energy and training to the McDonald's Womans 8K, or as we called it Jake's Race. I am constantly amazed with how much our friends are finding ways to support us, and now Leukemia - Lymphoma Society, along this path.

The shirts have a picture of Jake and the frame says Jacob is our superhero. In our book - the ones wearing the shirts are superhero's as well.

Dear Debbie, Daimi and Vicki

thank you for running the race for me. I hope you are not in pain.I hope you liked the t-shirts ms debbie gave you. sighned jacob

How big is your God?

2008-06-06T16:02:00.001-06:00

I am not sure how many people who visit this site have a relationship with God vs. those who don't. But for those of you who don't, let me share a little bit about how big OUR God is.

Jacob went into the Dr. today for another round of Chemotherapy administered via IV. During this visit, he also had a blood draw done so that they could check his cell counts and immune levels. Not sure if you remember, but a couple of weeks ago we got the results and Jake's ANC level was up from 40-50 to 180. For a normal, healthy individual, counts will be between 1500-8000. When this level gets as low as 500, the body's immune system is incredibly vulnerable to infection as it will have a very difficult time fighting off the bad bacteria. Today's counts for Jacob were 1130.

In case you missed that - I said it was at 1130

Because of these counts being as high as they are, the Dr. gave him the OK to go swimming and he can be taken off of all dietary restrictions. With his body improving at this rate, they said that he is at the extreme high-end of expected recovery rate. He is improving at a much better rate than any of us could have expected. Because of this, we are celebrating this evening by going out for pizza and ice cream. Jake has had a craving for Old Chicago for a few weeks now, so we felt this was the perfect time.

So back to my initial question, how big is your God?

Our God DOES hear our prayers and the prayers of our loved ones.
Our God DOES take tough situations and turns them into good.
Our God DOES bring healing to the broken.
Our God DOESN'T leave us or forsake us when times get tough.
Our God DOES love His children
Our God IS a miraculous God.

He truly is the God of Jacob!!!!!

Here's to a great start to the weekend.

Friday Breakfast

2008-06-06T08:16:00.002-06:00

It has been a few weeks since Jake has been able to start his Friday with some food in his system. For the last 3 weeks he has been scheduled for surgery on Friday morning, so he has not been allowed to eat any food after 2am.

For most of us, that is a small inconvenience and we can deal with it. However, for Jake this has been a pretty big deal. Most of us will eat 3 meals a day as well as some snacks in between. Jake eats about 6-10 "meals" a day thanks in part to the steroids that he is on. These meals are not just small things like a sandwich and chips. They are full meals with multiple helpings. Within an hour of eating, he is already looking for something more to eat. It is a very strange thing to watch someone of his size put away this much food.

He was blessed this morning by some very large cinnamon rolls. He said it was very hard to wait for them to be ready because they were smelling so good.

Today he will be heading into the clinic to receive an IV treatment of Chemo as well as having some blood drawn for more tests. We are hoping...No, we are EXPECTING to hear great results today.

The Box

2008-06-04T19:15:00.005-06:00

The President may have an aide that carries "the football", but Jacob has a Mommy and Daddy that carries THE BOX!

It is hard to believe that it was less then 3 weeks ago that we were sitting shell shocked in the hospital listening to Dr Odom explain what Jacob's treatment plan would be. The sheer number of letters in each drug name made them impossible to pronounce - how would we ever figure out what drugs , when and in which amount to make sure that Jake was getting exactly what the DR wanted and when.

Then Brian created THE BOX.

Jacob is very good at swallowing pills and that has helped the whole process immensely. He has to take a lot of them. And for the most part with absolutely no complaining.

Morning Medicine

Lunch

Dinner Meds

Makes a daily multi vitamin seem a little puny. The good news is all of the medicine is working!!! The finale count from last weeks biopsy (Day 15) showed that the percentage of leukemia cells in Jacob's bone marrow was .2%. Please note the decimal point. His ANC (ability to fight of infection) was up to 180. The Dr is very pleased and we are ecstatic. This Friday we will be visiting the clinic for blood work and IV chemo but there will be no surgery!

God has been more faithful and more present then I could have ever imagined. Our friends and family have been more loving and supportive then we could have dreamed. Our pastor said in his blog last week, "Share Jesus and the gospel with everyone you know... and if absolutely necessary, use words." In the last three weeks we have seen people live like Jesus. Thank You!

message from Jake

2008-06-04T10:08:00.002-06:00

Dear Mrs. Goodman's class,

It's me Jacob. Iv'e been very sleepy latley so iv'e taken naps every now and then. today, I have a lunch date with my dad. We are going to have Mcdonalds for lunch. I am having another lunch date with Mrs. G. next Wednsday some time after school.
Sighned,

Jacob Carlson

Last haircut for awhile

2008-06-02T08:46:00.003-06:00

Isn't it weird how we are shocked by things we know are going to happen?

Chemotherapy = hair loss.

Yet, when I brushed Jake's hair off his forehead to kiss his sweet face, and my hand came away full of hair, I was shocked. Some how it made him seem so much... sicker.

I think this one is also a little harder on Jacob. We have talked about it a couple of times and he did finally relent to having his hair cut. I am not sure what finally persuaded him, the thought of all that hair being on his pillow case as it came out or Daddy pointing out the a hair cut would make him cooler (yeah for summer heat!). Either way we now have our "official" summer hair cut.

We have also spoke with Jacob about the generous offers from friends and family to join him in the "bald is beautiful" movement and so far - he is not on board. No real explanation why, but so far every time we mention any one else shaving their head (from Mommy and Daddy to friends and family) the answer is always a very polite "No Thank You".

If that changes - we will open the Carlson Barber shop and if you are ahead of us and already shaved it ...

ooops

Even Super Hero's have bad days!

2008-06-01T18:20:00.006-06:00

The days following surgery are usually very hard. Extra tired, fatigue and lots of emotion catch up with even the best of super hero's.

As a photographer I knew I was not getting the best out of my hero - as a Mom these pictures are so precious! Enjoy.

Got Cancer?

2008-06-01T17:53:00.005-06:00

Here is a T-Shirt that Jake got from the Oncology clinic.

On the back, in case you can't read it - it says:

You can't catch it from me.

I'm the same old me -
I just have a new look

Sometimes I feel sick
because of my medicine

I still love to have fun

When I am done with my medicine,
my hair will grow back

I still think about what I want
to be when I grow up

I am NOT my cancer

Friends don't let friends
go through cancer alone.....

Day 15

2008-05-30T18:11:00.002-06:00

Today is a very important day... day 15.

We have completed two weeks of chemotherapy and the bone marrow biopsy taken today (results will not be available till Monday) will tell us if we are using the right agents in the right amounts. Jacob's first biopsy on the 16th showed that over 85% of all cells being produced in the marrow were leukemia cells. By the 23 of May that number was down to 15% and the magic number we are looking for from today is <5%. If we are under the magic 5% then we will continue with the set course, complete two more weeks of the induction phase and then move on into consolidation. If we are over 5% then they will ramp up the chemotherapy for the remainder of the induction phase and until remission.

Over all, Jacob is doing really well. We are so happy that

**We interrupt this blog posting with new info**

Dr Odom just called, the pathologist stayed late and is reporting a leukemia count of less then 5% from Jacob's bone marrow today!!! Thank you Jesus!!!

...Talk about good news to send you into the weekend! If I have not said it before, let me say it now, "We have the best medical team EVER!" They treat Jacob as if he is one of theirs and they make this sucky journey seem survivable.

Jake is making his way through this induction phase with only minor side effects to the chemo. We are having some fatigue and tiredness as a result of the meds, but most days he still manages to take a walk, engage with the family, build with legos. He is hungry all the time. The families bringing us meals have been the best blessing and you keep the family morale really high. Jacob usually asks who's bringing what during the latter part of his breakfast and then dreams and fantasizes about it off and on during the day. The same steroid that makes him hungry also gives him mood swings so surgery days where he has to wait to eat can be a bit dicey. Fortunately, once we get to the clinic they have cup of noodles and oodles of other foods and snacks. This is essential to get back into Jacobs good graces.

Speaking of the hunger - it is back. We are off to Sonic for a lil ice cream treat! Mmmmmmmmmmmm

Joshua & 1st grade field trip

2008-05-30T18:04:00.001-06:00

Quick Jacob Update

2008-05-29T20:28:00.004-06:00

Blood tests from today showed that his ANC was down to about 75. It looks like his cell counts and platelet levels were at a level where he will not need a transfusion prior to his surgery tomorrow morning. They will do one more blood draw in the morning just to make sure things will be fine.

We received a call from Dr Wagner again letting us know that he will be the anesthesiologist again for this surgery. He has been incredible at checking in on Jake throughout the last 2 weeks. He said he can give Jake the anesthesia via a mask with some watermelon scent added in. Jake really liked it last time and talked about it quite a bit.

Back to the routine

2008-05-29T07:12:00.002-06:00

Here are a couple of updates on where we are today......

Today Jacob will be heading back to the Clinic for some blood work. He is preparing for surgery tomorrow and they want to make sure his blood levels are at an acceptable level for the procedure. This is the same routine that he has had to go through for the prior two surgeries. If the counts are good, then there will not be a need for a transfusion. With the very encouraging visit we had to the Dr. on Tuesday, we are optimistic that things are moving in the direction they need to be.

While Jake and Tanya are at the clinic, I will be accompanying Josh and his class to the Science Museum. He is very excited to introduce me to all of his friends. As someone who has a need to be the center of attention on a regular basis, this ordeal has been tough on Josh in different ways than the rest of us. He has started to understand and accept the situation for what it is. That doesn't mean he likes it, but he is starting to find his groove with it now. We'll take some pictures at the Museum today and get them posted here as well.

We have always joked in the past about how someday our boys are going to grow up and eat us out of house and home. Well, that day seems to have come much faster than we anticipated. Thanks in part to the steroids, Jacob's appetite has hit an incredible all time high. He is putting away more food than I have ever seen someone his size eat. He is eating so much, that after a meal is immobile for a while as he allows his body to process what it just consumed. Last night, after dinner, he laid on the couch and apologized to his belly for eating so much. We talked about this last night a little, and we have decided to blame this dilemma on all of the wonderful people who have brought us some amazing meals!!!!

Round 3

2008-05-27T15:43:00.002-06:00

We had our Dr visit today and the numbers are going up. Jacob's ANC count rose to 150 which indicates that the bone marrow is producing healthy cells. Yippee!

The results of last Friday's bone marrow biopsy show more leukemia cells then desired at this point of treatment. We had been hoping to be under 5% and are actually closer to 15%. This is not a major problem - but to be on the safe side they will do another biopsy this Friday. If the numbers from that one are not under 5% they will intensify the chemotherapy regiment for the rest of the induction phase. The Doctor is not expecting this based on the results showing in his blood counts.

Overall the visit was good and Dr Odom is pleased with the progress Jacob is making. Jake was happy overall with the visit and pleased that he was given permission to eat a bag of chips by the Dr (that was his pressing concern to voice in this visit). Not so happy by the trade off that there will be no more until the weekend - oh well.

New Rule

2008-05-26T22:21:00.002-06:00

So here is my new Rule #1

At the end of a junky day, NEVER google anything to do with your 7 year old's cancer!

We meet with the DR tomorrow and after 30 minutes of reading tonight I think it is time to ask the tough questions.

If you are reading this - if you know Jacob - if you know Jesus - PRAY!
We need God to heal our baby and the God of the universe has a history of
answering the prayers of his people.

Please know that one of the highlights of our day - helping us get through this diffucult time - is that people click on this blog to check on Jacob. How amazing that there are people around the world to whom our family is even a blip on your radar. That you mention our names in prayer. That you comment with words of encouragement to let us know we are not alone. Thank you for that precious gift - it is truly a life line right now.

Tired! Very, very tired.

2008-05-26T17:32:00.002-06:00

I am not sure what is going on at our house - but the overwhelming feeling is, "I am tired!"

Jacob had 3 long naps today, struggled to dig up the energy for a walk around the courtyard and was only able to after being told that it would help him better appreciate the Popeye's chicken that was being brought in answer to his craving. (It hit the spot - thanks Traci!)

Brian and I were barely able to muster the energy needed to hang ceiling fans (thanks Milgm - they make the bedrooms so much nicer to sleep in) and have been more or less on the couch since then.

Joshua, who normally lives life like the energizer bunny on speed, has been at a slower pace today as well.

Not sure if it is the weather (the dull gray and high humidity reminds me of a MN day) or it is part of the process in accepting all that is going on. I am all for resting - and I know that my number one way of handling stress is taking a nap - but tonight I will be praying that tomorrow comes with more energy and sunshine.

Relaxing Day

2008-05-24T20:40:00.003-06:00

Other than the day after we came home from the hospital, which we had NO idea what to expect, today was the first day that we have not had to run around and go see a doctor or visit the clinic. It was a gorgeous day today, which gave us a couple of opportunities to get Jacob out for a walk. We walked by the pool today and saw that it was open and there were people swimming. We are planning on talking to the doctor on Tuesday to see what the time frame is before he can do some swimming. He could use the exercise and a little bit of fun.

Joshua and I woke up this morning and got to go see the new Indiana Jones movie. They were giving away some Indiana Jones hats, so we made sure to get one for Jacob. He looks good in his new hat.

Looking forward to the rest of this weekend, we are hoping for a couple more days like this. Days of rest and Days of some family time.

Home Again

2008-05-23T15:14:00.002-06:00

Just wanted to give a quick update on the hospital visit today.

Jake's surgery went very well.

No leukemia cells were found in the spinal fluids

We will not get the detailed results of the biopsy until Tues. At that time we will know whether he needs to go back in for another biopsy next Friday or whether he gets to go back in 3 weeks.

Blood labs came back today. The doctor was very pleased with the results. His white/red/platelet counts were low, but they were at a level that is expected for someone at this point in their treatment
The doctor was also happy to report that this was the first time they had seen new, young cell counts in his blood work. This means that the marrow is beginning to make cells on its own now that the leukemia cells are being destroyed.
Jake was thrilled when we got to the clinic to see that they had Easy Mac that he could eat. He was still a little upset that we wouldn't let him have breakfast this morning.

We are all back at home now, taking a nap after today's treatments.

Thanks again for all the prayers!!!!!

A new normal

2008-05-22T20:58:00.002-06:00

I have used the phrase - a new normal - a lot the last few days. That is where we are, learning to live with a new normal. And that is ok - there are some great things going on in our new normal.

Knowing that you have more people then you can count who love you, care about you and are concerned about you. Friends and family who are willing to do ... anything. Simply with the hope of helping you.

The new normal has an intense focus on the importance of family and the relationships we have with others. It is so easy for life - the urgent- to rob you of what actually matters. Like playing catch with your son. Children who trust you, and like you and want to spend time with you. Laughing with your spouse. Speaking with a friend on the phone, catching up, sharing life.

Realizing (really getting it) that the creator of the universe, Father God, intimately and actively loves us. His finger prints are everywhere in our life and He has been with us so faithfully through every second of this journey. He cares so much more about sonship then service and He loves us. We are his treasure.

Our new normal has a growing knowledge and appreciation for the fact that today is precious and should be lived fully. Find balance. (Notice that even in the new normal I did not say I have found balance, it is the new normal not heaven!) The entire "to- do" list does not need to be completed today - sometimes building with Lego's is far more important then organizing your entire house.

Have you ever thought about how many times you are asked "How are you?" in a day? I never had till this week. This week I found myself having long awkward pauses after being asked that because I was SO not ok. There is no easy transition from "How are you" to "My son has leukemia." "Nice weather we are having!" does not easily lead to "Jacob has cancer." Eventually I started answering, honestly, with an I don't know.

Today, coming home from the hospital, Brian and I both realized that we could answer the question with, "I am good." We, like every parent in the world, would never choose this situation. Brian and I would gladly pay any price to take this from our son. But we are starting to see that our life is good. We are learning and growing and really finding out how to live the life we want with our focus on what really matters.

The clinic / hospital visit today provided us with some more good news. First and for Jake most important, re accessing the port did not hurt! Before leaving home we slathered him with some emla cream (numbing) and then sealed it in with Press n Seal. Who knew? At the clinic the first thing was a finger prick and Jacob was a little upset because it hurt - until he got to go to the toy closet and picked a small Lego set. After that was time to insert the (very large) needle into the port and Jake was squeezing our hands for all he was worth. Z, the nurse did a count of three and he freaked out a little on 3. Of course she had inserted it on 1 and he quickly calmed and said, "That didn't hurt. I didn't feel it." He is starting to trust that we are telling him the truth.

Dr Odom then gave us some good news and some news that raised a couple of question marks. First, the final tests of Jacob's spinal fluid confirmed that there were -0- leukemia cells in the spinal cord / brain. She also let us know that some early pathology on the bone marrow was confirming that the chromosomes involved were the kind that are favorable to treat. That news came with a bit of an asterisks - because they are also seeing an additional chromosome involved (one that is harder to treat) and they have not seen this combination before. These are early reports and as they continue to process the bone marrow they will have more information. For now - I know that God has seen that combination before - and we ask that you join us in praying that he continues to give wisdom to our medical team. We will know much more of what impact that will have on treatment when we reach the 4 week mark.

Next we went across to the hospital and settled in for the platelet transfusion. Any time they do a transfusion they give Benadryl prior - to limit any reactions. Last week Jake reacted to the Benadryl (when it was an IV push) by having the worst headache ever imagined. Brian said it was all he could do to watch him scream in pain until the Valium worked, and has since described it as the worst half hour of his life.

Well, today we had the IV push and because of the reaction last week they did it much slower trying to minimize the side effects. Minimize yes, eliminate no. Jake started fidgeting, moving, shifting, wiggling and Brian recognized that as what had been the start of his negative reaction. We quickly called the nurse and as she came in Jake was on one foot with his arms braced behind him and his other leg sticking straight out. Then came the cramps. How weird is it that Valium becomes just one of many of your go to drugs. The pain was intense enough that he was arching off the bed - but the Valium worked quickly and he was able to fall asleep for the rest of the transfusion.

Needless to say - we had it put in his chart that he is allergic to Benadryl via an IV push. Yikes.

All of his blood work from the day came back looking really good. His body has caught up and is processing all the waste from the chemo cells and his chem panel looks really good.

Tomorrow morning we will check in at 7 (yes - AM) to day surgery. Jacob will have a bone marrow biopsy, a spinal tap and chemo administered into the spinal fluid. Once he wakes up in recovery we will cross back over to the clinic and he will have a different dose of chemotherapy via his port. Once that is done, and we get the all clear we will bring our guy home.

Pray! Please keep praying.

We will post tomorrow once we are home

Super Heroes

2008-05-22T16:49:00.002-06:00

Jacob has always loved super heroes. He can name every member of the Justice League and when there is a choice that involves super heroes, you can bet that will be his selection. When Brian and Jake were designing the wrist bands, the batman font was an immediate lock and it did not take all that long to land on "JACOB IS MY SUPERHERO". What happened next is what I love.

Jacob's 2nd grade teacher, Mrs Goodman, had asked if she could bring a present for Jacob. We live next door to our school so she walked home with Joshua to bring Jake his present (she hoped to visit also - but all y'all already know about our delays getting out of the hospital). Mrs G gave him the most awesome bible.

The SUPER HEROES Bible - The quest for good over evil - is the coolest kids bible I have ever seen. I am so excited and thankful for such a wonderful present that came at just the perfect time. Along with a host of cool reading aides, the theme running through this bible is that, "The super heroes of the Bible were regular people, just like you are, but they followed a super God. He worked in them so they became heroes for him. And so can you!" As you read the stories of the Bible you can use the Super Hero Decoder to figure out and track the hero's as they get their power from God himself.

Super Hero Decoder

Believes
Brave
Cheerful
Faithful
Forgiving
Giving
Helpful
Honest
Kind
Loving
Obeys
Patient
Self - controlled
Strong
Tells Others
Thankful
Tries Hard
Trusted
Wise

My friend Vicki asked what super powers would be activated by wearing Jake's wrist bands. These are the ones we are hoping to find in our family as we walk this new path. Last night as Brian and I were sitting on the front porch having our first real conversation since this all started he said something that to me was very profound. He was talking about how the trials of our life benefit us by shaping us into the exact person God wants us to be. Our hope is that months down the road, when we reach the milestone that says "CURED" we can look back and shout how God has shaped us - coded us - to be his super heroes.

And, if that is not enough, the title page of the Bible has these verses

[The Lord says],
"I will lead them along paths they had not known before,
I will guide them on roads they are not familiar with.
I will turn the darkness into light as they travel.
I will make the rough places smooth.
Those are the things I will do.
I WILL NOT desert my people."

Isaiah 42:13, 16

Thank You! Thank You! Thank You Mrs Goodman for such an awesome gift!

Doctors Visit Tomorrow 5/22

2008-05-21T21:30:00.002-06:00

Sorry for the mass postings this evening.

I thought I would give an update as to what Jake's schedule looks like for the next couple of days.

Tomorrow we are heading into the clinic. They are going to take another blood sample and check to see where all of his levels are at. In addition to the blood test, they are going to give him a transfusion of platelets to prepare him for Friday.

On Friday morning, he will be going in for an out-patient surgical procedure. They will be doing another bone marrow biopsy as well as a spinal tap. These are part of the standard process so that the doctors can make sure his bone marrow is responding to the treatment and to make sure that no leukemia cells have moved into his spinal fluid. Jake told me tonight that he is not worried about the surgery at all. He didn't remember or feel anything the last time he had his surgery, so he is completely at ease with Friday's procedures.

He continues to amaze me with his understanding of this situation as well as his ability to grasp all the steps that are being taken to help cure him of this sickness. We had another discussion this evening about the fact that it will not be too much longer before he will start to lose some of his hair. I explained that Josh and I are both going to shave our heads as well to help support him. He was a little concerned about this and doesn't really want us to cut our hair. He said that he doesn't want us to have to deal with people laughing at us. Unfortunately, by digging a little deeper on that one he commented that he expects people to laugh and make fun of him when his hair falls out. I tried to explain to him that I think he is underestimating people and that I would be very surprised if anyone laughed. We talked about some different hats that he could wear. He is wanting to get some Minnesota Twins hats to wear when all this happens. We'll have to see if we can find a couple of them here in Colorado since this is not Twins territory.

Pray for us tomorrow as we get his blood tests. We are expecting the white and red cell counts to be low, but we are asking God to make sure that the rest of the counts are right where they need to be to allow him to remain at home. He had such a good day today and commented that he liked being able to sleep in his own bed and play with his own toys.

Good Day/Good Night

2008-05-21T20:21:00.003-06:00

Jake had a good day today. he spent some time putting together some Indiana Jones Legos sets, reading books, catching up on a couple of cartoons, and letting his Dad beat him at Mancala.

The icing on the day was the Chicken Pot Pie that Ms. Debbie and Ms. Daimi brought for dinner. It was absolutely delicious!!! Jake was happy to see that there were leftovers for him to have for lunch tomorrow.

After dinner, Josh and I went out and played a little catch. Jake sat out on the porch and played with some of his trucks. Jake decided that he was a little embarrassed sitting on the porch in his PJs, so he decided it was time to put some clothes on again. Once that happened, the fun began. Jake and Josh played outside with their remote controlled truck and then brought out the Mancala board and played on the sidewalk. It was good to see Jake wanting to be outside and get some of fresh air and enjoy an incredible evening.

Let's hope that extra time playing helps him get that good nights sleep that he could use.

On another note - Ken, thanks for today!!!! I know I told you that it meant a lot to me, but I am not sure you truly realize how much it REALLY meant!!!!

Wristbands Ordered

2008-05-21T20:16:00.002-06:00

Ok - the response was a little greater than I had anticipated.

I have ordered 80 Adult Wristbands and 50 Youth Wristbands.

The site I ordered them from was https://www.wristbands-with-a-message.com
On this site you can create a customer wristband, which is what we did. Here was the info on the bands we ordered:

Font: Batman
Color: Black/White Swirl
Message: JACOB IS MY SUPERHERO

We will do our best to get bands out to as many people as possible. I will let you know when they arrive.

Jewlery

2008-05-21T11:30:00.001-06:00

I was talking with Jacob the other day about his illness; he really gets impressed when I start telling him the number of people who are praying for him as well as the number of people who are visiting and commenting on this site. We talked about what we could to do help us remember to keep him in our prayers throughout the day. One of the suggestions I had was that we could buy a wristbands and have something put on it that was just for him. So I looked through some websites to see what I could find. It didn't take long before I found the perfect one:

In the preview of the band, you can't see all of the words. But it says "JACOB IS MY SUPERHERO". I think the think that sealed the deal for me, was that the Font that I was able to select was call Batman Font. Once I saw that, I knew we were done looking.

Home Sweet Home

2008-05-20T22:56:00.005-06:00

Well, we made it.

A little later in the day than what we were hoping, but we made it.

The Dr. gave us the thumbs-up on going home tonight. After a family discussion between Jake, Tanya, and I we decided the best place to be was at home. Tanya and I were a little nervous about what to expect when we got home. Jake came in, grabbed a snack, and took his place on the couch. After a snack, we had to do some oral care before bed. It was at that moment that I knew we had definitely made the right decision. For the last 5 days, while in the hospital, Jake has had to pee in a container so that they could test his urine. Tanya and I held this container for him each of these days. After his oral care tonight, he asked me to step out of the bathroom and give him some privacy while he peed.

Welcome Home Jacob!!!!

p.s. Mark and Daisha, that roast ROCKED!!!!!!!!!!

The waiting game

2008-05-20T15:39:00.002-06:00

Throughout the day, we have made moved both backwards and forwards towards being able to get out of the hospital and get Jake back to his own bed for a little while.

This morning, his phosphorous levels were higher than they needed to be - mainly because the medication is breaking down the leukemia cells so quickly, but his body is still struggling to rid itself of all the toxins. They gave him an antibiotic to help with this and we have seen some good progress.

He has also been experiencing some jaw and throat pain today, so they have been watching him very closely to make sure he is not developing any illnesses. A sore jaw is a side affect of some of the medications that he has been receiving.

One of the biggest concerns with taking him home, is a count that is referred to as his Absolute Neutrophil Count (ANC). The ANC is not measured directly. It is derived by multiplying the WBC count times the percent of neutrophils in the differential WBC count. The percent of neutrophils consists of the segmented (fully mature) neutrophils) + the bands (almost mature neutrophils). The normal range for the ANC = 1,500 to 8,000.

When the ANC count is between 500-1000, you are considered Neutropenic. During this stage, the body has a very difficult time fighting off infection and bacteria.

This morning, Jacob's ANC count was at 24

This was expected to drop to this level with the treatment that he is receiving, but because of how low it has gotten, we are nervous about visitors to the hospital as well as about taking him home.

His levels are expected to remain at this level or fall even lower over the next few weeks as his body continues to fight off the leukemia. It is sort of like climbing a steep hill. You slowly lose momentum as you climb, and it gets more and more difficult to maintain your initial pace. However, once you hit that pinnacle, things begin to get a little easier and your pace will start to pick up. This is the same journey we are expecting to see with Jacob.

As of 4pm MT, we are still waiting for a decision on whether he will be able to go home today. his blood counts are looking good, but he has had a little bit of a sore throat and his temperature has been rising slightly. The Dr's wanted to give him some medicine and then follow-up to see if things stabilized.

Hopefully, we will get some confirmation one way or the other pretty soon.

Tired

2008-05-19T22:24:00.003-06:00

So much on my mind tonight - so much more I wanted to do today, to get done. Even with a great night of sleep last night (a Tylenol pm helped to shut down the non-stop mental racing) I quickly found myself back to ... tired.

Yesterday was an internal fear factor kind of day. The Dr's kept saying what good news it was that Jacob could go home. But for me, to take my very sick kid home, and fully into our own care again - nothing could be more terrifying.

Part of it was knowing that our house was soo not ready. Nothing makes you realize how much you live like a pig until you have an immediate need and deadline to clean your house and any time you take to do that - is taken away from your children. I want to say the hugest thank you to the women who came and helped at the house cleaning party. Dee, Leigh, Ashley, Vicki, Angela and Kathy - Everyone fantasizes about having someone clean their house for them - the reality is actually very humbling. That you would take your time and help us that much... to serve us in that way... Thank you for letting your actions show your love for us. Molly - you were instrumental to that happening - thanking you for using the gifts God gave you to love and bless my family. Because of all of you I feel it will be OK to bring Jake home.

Taking Jake home. That thought also makes me feel tired. Normally, when you take your child home from the hospital, he is getting healthier. For Jacob we are taking him home to get sicker. I can't wrap my brain around that - but my heart must understand because it is breaking right now. The chemotherapy treatment is daily. Pills in the morning. Pills at night. Swish and spit, Swish and swallow, support agents, Iv push, transfusions, injections... it is all working. We get copies of the blood work everyday and there are fewer leukemia cells. Medically speaking it is working and that is a great thing. But maternally speaking - I simply want to scoop his body up from that bed, take him away from all of the needles and machines, the medicine and the pain ... and go back to the life where hugging him did not cause pain and he could be a little boy.

So tired, and sleep is so far away.
At least my baby rests.

Moving Day - Postponed

2008-05-19T11:22:00.002-06:00

No major setback here, just erring on the side of caution.

Due to the delay in getting his morning treatment (which we are still waiting on), they would be able to let him go home, but it would not be until later this evening. To make things easier on everyone, we have decided to stay another night and allow the staff here to get him fully hydrated and ready for the move back home.

I talked to Tanya, and she was telling me that there was a whole crew at the house finishing up the cleaning and sanitizing. She encouraged me to not get too used to it and expect her to keep it at that level ;)

I will provide some updates later today on the progress of his cell counts as the doctor went over them with me this morning. All the counts are moving in the right direction still.

Moving Day

2008-05-19T08:54:00.002-06:00

Well, the day has arrived. The day that Jacob has been looking forward to and the day that his Mom and I knew would come all to fast. Today they are sending Jacob home from the hospital and will allow him to continue his treatment as an out-patient rather than having to sit in this hospital bed all day. This will get him into some more comfortable surrounds. He is especially excited about being able to sleep in his own bed.

He got some good sleep last night, but not before some minor issues. They needed to give him a blood transfusion last night to help bolster his system a little more before sending him home. Prior to a transfusion, they will give the patient some Benadryl to help prevent the body from rejecting the blood. The Benadryl hit him pretty hard and he got an incredible headache. He said it was located in the same spot that you normally get a cold headache when you eat your ice cream too fast. This headache lasted about 30 minutes, and it was pretty painful for him (and for me).

They gave him some Tylenol and Valium to help the headache, so the moment the headache stopped, he was sound asleep. I talked with the Dr this morning and she said that last nights headache was a known side affect of Benadryl when given through the IV> She said next time they will give it to him in pill form and things should be fine. Also, she said that this was not going to put a damper on us getting out of here today. Jake will have some shots this morning of Asparaginase, 1 in each upper leg muscle. This is a one-time treatment, and it's purpose to break down the amino acids that the leukemia cells use to multiply. He is not excited about the shots, but they did but some gel on his legs this morning that have been numbing the spots.

Today we are holding a house-cleaning party. With help of some friends, we are having the house prepared for Jake's arrival. Nothing major, just a thourough vacuum and dusting, washing of all lines, cleaning out the fridge, and making sure that all hard surfaces are wiped down with some anti-bacterial wipes. With this treatment, his immune system is expected to take a hit over the next 4 weeks. Our goal needs to be to keep him as protected from any major germs and infections during this time.

We are going to miss the doctors and nurses that we have had here. They have taken incredible care of Jacob and have been more than patient with us and all of our questions. They have made us feel loved and cared for. Many of them we will get to see in the future as we return for scheduled treatments and surgeries. We will look forward to seeing them again.

The Countdown Begins

2008-05-18T19:43:00.000-06:00

We went over Jacob's blood test results with the doctors this afternoon. They are still very happy with his progress as he continues to do better than expected. Because of this, the doctor has said that they are going to try and send him home Monday afternoon. He will need to receive some treatment in the morning, a couple of shots that he is not looking forward to, and then once they have had a chance to monitor him to make sure there are no abnormal reactions, they will let him head back to some familiar surroundings.

Jake is a little concerned with going home so early, mainly because he is concerned that he will be put to work right away. I tried to explain to him that we have left all of his chores for him over the last couple of days, so he has a number of hours of work to do just to get caught up.

Tanya and I are still a little concerned about the move home, mainly because they won't let us take one of these nurses home with us in one of Jake's bag. I see everything that they have been doing for him and I get a little worried that we will mis something. Tanya has taken great notes from all of the discussions we have had with the nursing staff and the doctors, so we should be OK. They did give us a 24/7 phone number that we could call with any problems or questions. I am sure it won't be to long before they get sick of getting called every 5 minutes.

We are going to sneak in a few more laps tonight and then they are going to give him another blood transfusion to make sure his system is bolstered up for the trip home tomorrow.

Adapting to Hospital Life

2008-05-18T06:58:00.000-06:00

Jacob is adapting to hospital life with lightning speed. What better way to start your morning then a few new friends and a great Sponge Bob comic book. Jake slept for 9 hours last night and only had to get up once in the middle of the night. This morning he is raring to go!

Yesterday was a pretty good day - the main challenge Jake had was lots (LOTS!) of muscle aches and muscle spasms, up to a 10 on the smiley pain scale. Grandma Dee was a great help in massaging those away, swapping the hot packs and generally distracting him in the midst of the pain. One of the major contributing factors to the muscle pain is the almost complete lack of movement and activity for the last 48 hours and so we are working on getting some exercise to that little body. Usually that is walking a couple of laps around the hallways of the 8th floor. We have even managed to set the security alarm off on one of these jaunts - but according to the nurses - not our fault. Any time something starts beeping Jake is quick to analyze if he is causing it and then declares, "Not me!"

When we leave the room Jake has to wear a mask. His favorite right now is the Disney Mickey Mouse and friends. This just helps protect him from any wandering germs out there. We are all learning how to navigate with the IV pole and are making strides. I imagine if we stay much longer Jake will be riding it around the halls like a skate board.

Yesterday afternoon we did get the kind of news we want to hear. The chemo is already starting to work. Jacob started his chemotherapy Friday night between 10 and 11 PM. The blood draw they took at 4 AM showed increased platelets (into the low end of the normal scale) and a decrease in the blasts (leukemia cells)! Thank you Father God.

Our friend Allison pointed out this amazing verse in the bible, Isaiah 58:8. It starts by saying, "Then your light will break forth like the dawn, and your healing will quickly appear;" In the midst of the scariest time in our life - God is faithful!

Right diagnosis *
Right Hospital *
Right Doctor *
Right Medicine *
*Right God!

Ironman

2008-05-17T16:12:00.000-06:00

Jacob is proud of his x-ray showing the location of his meta-port. This port allows him to receive medication and fluids without the need to stick him with a needle. The port is also used to take blood samples for testing.

The port is located just below the skin, so he will be able to take showers and later this summer he will be able to go swimming without having to remove any equipment. He has enjoyed showing all of his visitors his battle scars and describing it's new uses.

Treatment Update

2008-05-17T08:55:00.000-06:00

Good Morning!

Jacob made it through the the night wonderfully well. He was up a couple of times going to the bathroom and having vitals taken, but other then that he got some good sleep - and the slight fever he was running broke in the middle of the night! He is feeling very little pain (3-4 on the smiley face scale) from his med port placement and is on no pain medicine right now. At this moment he is watching Saturday morning cartoons, playing with Indiana Jones Legos and waiting for his buttermilk pancakes to be delivered.

Brian and I both stayed with Jake last night and worked on mastering the skill of the sleeper chair. Our awesome night nurse helped us wrangle an extra one in and both of us were able to get some shut eye as well. The entire staff at P/SL (our hospital) is top notch and they are taking the best care of our entire family.

Last night we spent a long time discussing treatment options with Dr Odom (Jakes Oncologist). She reviewed the Bone Marrow Biopsy and it confirms that Jacob has ALL. The spinal tap fluid from his surgery yesterday shows no Leukemia cells on initial examination which is really good. During surgery they did administer the first round of Chemo into the spinal fluid. This helps to decrees leukemia cells from "hiding out" in the spinal cord as the other chemotherapy agents are introduced and start to work.

After a very lengthy discussion (our Dr is amazingly thorough and patient) and a detailed analysis of benefit / risk we have consented for and started Jacob on a standard risk ALL chemotherapy regiment. We started last night and for the next four weeks will be in the induction phase of this plan. Today is day 2. They are using 3 main chemo agents during this phase and expect to see by day 15 a reduction in leukemia cells from 100% to under 5%.

During this induction phase, we will see Jacob's immune system weaken and that does place him at a very high risk for infection. With that in mind Brian and I are trying to leap into our role as patient advocate and watch for any signs of infection in Jake and in anyone he comes in contact with. The Dr has OK'd visits - ALL VISITORS MUST BE HEALTHY AND INFECTION FREE!!! If you are fighting any sickness we ask that you call and pray but wait to visit until your health is recovered. We are also asking that visits be kept under an hour so that Jacob and family have time to rest. If for any reason Jacob needs to stop receiving visitors we will post that hear on the blog.

We had a packed house yesterday - both in the hospital room and across the blog. We are sharing all emails & comments on the blog with Jake and it has been very encouraging. He loves knowing (once he gets over a little shyness) that there are people around the country thinking about him, checking on him and praying. For those who were able to stop by the hospital he loves looking at all his cards on the bulletin board and the Legos, games, snacks, books and colors are helping to fill the time around treatment. Thank You for loving our son so much.

For those that I have not spoken to directly we are Presbyterian / St Luke Hospital. This is the Rocky Mountain hospital for children and has an outstanding reputation for patient care, especially for pediatric oncology care. They just celebrated their 125th anniversary and we are so thankful for God leading us to this site. Brian and I have complete trust and peace in the care Jacob is getting. The address for those of you who have been asking is

Presbyterian / St Luke
1719 E 19th Avenue
Denver, CO 80218

We are in room 802 and the room number is (303) 839-7802.

The earliest we could leave the hospital is Monday and they are currently expecting this visit to go to Tues / Wed.

Jake is getting concerned over the absence of his pancakes - so I will post more later.

Surgery follow-up

2008-05-16T22:41:00.000-06:00

We met with Jacob's doctor this evening to discuss the results of the surgery from earlier today and some of their findings.

We will post more details in the morning concerning the names of medications and the frequency, but with the sheer number of people who are looking for updates, we felt it was best to get something out there.

The initial tests on the spinal fluid came back with ZERO leukemia cells in the spinal fluid. YAY!!!!
The tests on the bone marrow did confirm the initial diagnosis, that the type of leukemia Jacob has is ALL. Because they were able to confirm this, we chose to begin chemotherapy treatment starting this evening. Jacob has taken his initial doses for the night and they will take a blood sample in the morning with the hopes of being able to see some significant changes in his blood cell counts. We have been given printouts of the pre-op cell counts and will be given a copy of the updated ones in the morning. We will be sure and share this information as well.

Tanya and I are staying the night with Jake tonight since his treatment has begun.

We thank you again for all of your prayers. We have had a great time sharing your messages of prayers and encouragement with Jacob.

Surgery Update #2

2008-05-16T16:54:00.000-06:00

WOW - what an amazing God we have!!!!!

Jacob is back up in his new room now, doing better than ever. He came out of the anesthetic better than expected, and the pain is at a level that they are able to control with some meds.

Thanks to all of your emails and voice mails offering encouragement and help. We will never be able to thank you all enough.

Next steps....waiting on the biopsy results so that we can start putting together a plan for chemotherapy treatments.

Here are a couple of post-surgery pictures of Jake.

Surgery update.....

2008-05-16T11:44:00.000-06:00

Jacob has moved on from surgery and is now in the recovery room.

From all indications from the surgeons, the processes all went incredibly well.

We will update more details as we get them.

- Jacob, just prior to leaving for surgery.

Where were you.....

2008-05-16T01:33:00.000-06:00

It has been a number of weeks (months) since the last update on our blog. We figured now would be a good time to start back up.

For many years, I have listened to and enjoyed the song by Alan Jackson - "Where Were You When the World Stop Turning". Every time I hear that song I think about where I was on 9/11 when I first heard what was happening. I can relate with a number of feelings that are shared within that song. Today, the title of this song has brought a different meaning to my life.

Jacob went into the Doctor on 5/14 with the expectation of being diagnosed with pink eye. He did in fact have pink eye, but he came away with some much larger. They drew some blood from him and did some additional tests. The next morning we received a call from the doctor asking us to take Jacob into the ER so that they could run some additional tests. These tests confirmed the tests from the previous day. Jacob has acute lymphocytic leukemia. I am not sure how, as a parent, you can ever prepare yourself for this news. Especially when you are taking your child in for pink eye, but other than that he has been an exceptionally healthy child. Sure, looking back we can see some signs that there may have been an underlying issue. But kids get colds, kids get the flu, kids get fevers.

There have been many tough days in my life, many of which I would give anything to have changed the outcome. This one has now taken over the top spot. To have your day go from sitting in meetings at work, to driving across town to a hospital as you can hardly see straight because the fear of the unknown has caused the tears to pour out faster than you can wipe them away.

Tomorrow - May 16th @1:00pm MT, just more than 24 hours after being diagnosed with leukemia, Jacob will be taken into surgery as they perform a bone marrow biopsy, a spinal tap, and they will also insert a tunneled catheter in his chest that will be used as they start his chemotherapy treatment. The surgery is expected to last about 1 1/2 hours.

Tanya and I have received an incredible amount of support from our family and friends, we are doing our best to try and keep people informed as to what is going on and what we know. It has been a difficult day, to say the least. Our plan is to try and update this blog on a regular basis so that anyone interested in an update will have a place they can check and it will also allow us to get the information out in the open.

I ask that you continue to pray for Jacob and his family as we continue on our new journey.

First Day of School

2008-02-06T21:26:00.000-07:00

On Wednesday, January 30th, Jake and Josh started attending Red Hawk Ridge Elementary School. This was a very exciting day in our house - one the boys had been counting down to since we had decided to enroll them into public school. To be honest - I am not sure if they were excited about school or the things that go with school. Backpacks (Thank You Grandma Dee) were very crucial in getting ready for school, as well as many conversations on hot lunch. Once Jacob heard that there is a back up choice of peanut butter and jelly everyday he decided to get on board.

Tuesday evening I was starting to get a little anxious - you know - babies going off to school and the whole bit. I had tons of thoughts racing through my head as I went off to sleep. Brian and I had set our alarm for 6am thinking that would get us up and out the door in plenty of time. Apparently the boys thought otherwise because they were up and going long before the first beep of our alarm.

As Brian hit the snooze button we could hear them up and about and already well into the day. After a little question and answer time we got the whole story.

Joshua woke up first (at 5:22, a detail that he did not want left out of the story). As he started going about his day - Jacob was pretty quick to join him (at, "about" 5:37). By the time we put our robes on and made it downstairs the boys had made and consumed breakfast, put the dishes into the dishwasher, brushed their teeth, dressed, lined up their jackets, hats, backpacks and were standing at the door discussing if they should take Elmo (the dog we were puppy sitting) outside for a walk. It was this conversation we overheard as our alarm went off. They were reasoning amongst themselves on whether they should take Elmo outside to do his business. They argued both sides, how they had committed to walking the dog but took into consideration how, since Mom and Dad were in bed asleep they did not have the freedom to unlock the door. Both guys decide they should wait. It was at this point that I looked at Brian and said, "I think they are ready for school."

Awesome way to start the first day.

Quiz Time

2008-01-12T21:36:00.000-07:00

Today we drove out to Arvada to participate in a Junior Bible Quiz meet. Our boys are both on the same team, with another girl who has been quizzing for a couple of years. Although this is only their 2nd year quizzing, I cannot tell you how proud I was of my boys today. They dedicated quite a bit of time over the last couple of weeks to their studying of the questions, and it definitely paid off.

They took 1st place today as a team and then took 5th and 6th place for individual scores. They could have ended up with higher individual scores, but it was great to watch them work as a team and make the individual sacrifices so they could win as a team. It is enjoyable to watch some truly adult traits starting to be developed in a 6 and 7 year old.

I am looking forward to watching them continue to grow in the quiz program as they are pushing and encouraging each other to do better. This always works better when it comes from them than when it comes from us.
February will bring the quiz meet to our church. Hopefully the home-field advantage will work in there favor.

Great Job Guys!!!!!!!!