Routine

The word routine has never applied to me. My schedule is different everyday. Sometimes the words disorganized and unorganized could be used to describe my routine. Some say my life would be less chaotic if I had a traditional job. I believe it's true freedom when you make your own schedule and carve out your own path in life. Don't get me wrong, there has been times I wish I worked for the other guy. But it is not my gig!

In San Diego, I could visit the kid's at school as often as I wanted. In LA, I did the same. The last year has been exciting because my company http://www.inadtv.com/ has started to move in a positive direction. But more importantly, it's been rewarding. To see something develop into a product from an idea is an incredible thing everyone should experience.



I started this biz out of the garage and it has developed its own legs. My family has sacrificed and stood by me when everyone else disappeared. I've questioned my decisions, my life, and my legacy. I want to be a good person. I want to be a good provider. I want to set a good example and show my children that if you have a dream you can take chances and capture your dreams.


What would I leave behind for my kids. Would they be inspired to do something out of the ordinary? Would they take chances in life or play it safe? It really doesn't matter what direction they take. I just want them to live life and enjoy the journey.

I need to get back to my routine.

Pain

July 22, 2007 - You gave us the name. Leukemia. We didn't want it but we took it. The sickness. We accepted it. The exhaustion we dealt with it. We'll work around the inconvenience.

But the Pain? Come on! What in the world could justify the pain? Give us any thing and we'll take it like a punch in the face. But the pain. It kills. I'd take anything but could you please leave out the pain. The bones aching, the fingers and toes curled from the hurt.

The helplessness of not being able to comfort your baby is horrindous. To have your little one grabb your hand for comfort, only to realize that you can't fix it tears you apart. When they release that hand is when you know that they know that this fight is truly internal.

I have never been around someone that is battling such pain & sickness. The fight is enough to make you pray, plead, and shout. I think this eventually will become a gift. A gift that test ones courage, toughness, and spirit. A test that will make my baby girl smell things differently. Taste in a new way. Live life in a new perspective. I only wish we could leave the pain out.

The Sound of Laughter

July 19,2007- Hello. I am writing tonight at 10:27 pm and there is laughter in the house. My nephew Trey is playing with my son and Nathan in the downstairs. Christian baby sat for a couple hours for my sis Kelly. It sounds so good to hear laughter and playing. This house has been the house of sorrows of sort. We have been taking care of Kaylee and it seems that has been a full time gig.

I have to be more censored as this situation progresses. I really get some theraputic release by writing, but making it privite is what I might have to do. I don't want to invade KK's privacy by writing to much about her ordeal. I love my little girl. She is still losing weight but her body is fighting.

Worried About Everyone Else

July 16,2007 - Me and Kaylee are laying in her bed. I left early this morning and just got home. Today has been tiring as usual but KK is worried about everyone else but herself. She is worried about Christian and concerned that he doesn't know what to say when he's alone with her. She often comments about her best friend Alyssa, and how upset shes going to be with this treatment or this diagnosis. She is concerned about everyone except herself. I love her because she cares for everyone.


I am trying to get into my normal routine but find it hard to do anything. I don't want to be far from home. The guys I work with are understanding but I can't explain how it has effected me. My days or my life isn't the same. It will be close to normal in the future but right now it is still chaotic.

It Happens Sometimes...

July 13, 2007 - Friday the 13th - We spent the day at Childrens Mercy Hospital getting 5 minutes of chemotherapy. It took 4 hours of time but who cares. We received the treatment now we have to wait to see what effects it will have. Kaylee has only been getting 50% of treatment and she has been getting sick. We expect a sick weekend, but hope for the best. Kaylee lost another 3-4 lbs. since Monday. She has lost 30lbs. in 2 weeks and is so weak that we have to assist in the little things that weren't so tiring a week ago. Stairs,getting in and out of the car, and walking.

July 14, 2007 - 12:57 am - The chemo made her very sick this time. It is hard for me to go into her little room and watch her in pain. She says she is tired. I know I've written that before but it is different each time she says it. I so believe she is tired.

I've randomly started crying a couple times to people I normally wouldn't. Its even happened to strangers. I broke down today, they were "accessing KK's port", a terminology I wouldn't care to really know, but it made me so sad to watch them take more blood. It hurt when her eyes tightened as the pain hit from the nurse putting a needle in her. I want to take the pain away! I think I finally have gotten passed the numb stage and reality sometimes hits. Music sometimes triggers feelings that are sad or joyous. Maybe it's good to let out alittle emotion every now and again!

I sometimes wondered what it would be like to take care of Tammie or her taking care of me if one of us fell ill. It was always in the the far future. I never considered taking care of one of the kids. I know there are people who have dealt with this before me and unfortunately there'll be others. I wouldn't wish this on anyone.

15 Today...

July 12, 2007 - Today is KK's birthday and it is bittersweet. I am so happy that it is Kaylee's birthday but it hurts to see her struggle with the simple chore of entertaining. It's not like she is entertaining on a tight rope or juggling 5 balls, she is running empty just sitting at the table. She is so sweet! We tried to get her to tell us what she wanted for her b-day but all she could come up with was perfume. A nice selection, but I thought she would milk it for something high-tech, expensive, cutting edge, but you can see that materialistic things aren't important.

Every year when Kaylee's birthday would arrive or just prior to arrival she would have a meeting/discussion with me to discuss her big day. Since her birthday was during the summer she always planned big party's and spent plenty time planning. Our normal was the waterpark, but occasionally she would plan something unique. One year she pampered herself and six other girls with a ride in a limo to a manicure & hair-do day. We did picnics,beach, and Vegas.

This year is such a reality check. The birthday took a back seat to her illness this year. Not that her day is less important, but she really didn't have any input or concern on what took place today. I wished her Happy Birthday this morning around 8:30 am. She went to the last 1/2 hour of cheerleading practice. She was so excited to watch her cheerleading crew. Some of the girls came over after practice and brought a cake & presents. She was relaxed when I checked on her at 12:30 pm. I asked the reoccuring question "how you feeling?" Her face and answer are always the same "I'm fine" with a smile. I could tell she was extremely tired but wanting to act strong in front of the girls. Tammie said she almost sprinted into the gymnasium this morning because she was so excited.

Today was emotional for me. When I checked on her this afternoon she smiled and said she was doing great. When she responded you could tell she was digging deep to get her answer and conversation out. I have the habit making that tired sound effect when I get exhausted. WOO! I'm not sure how you spell my sound effect but that's my try. Kaylee smiles and grabs all her energy to talk when she's worn down. She won't give you the woooooo, she gives you a smile. I love her so much, Happy Birthday baby!

I can not explain the pain of looking at my child and seeing the drastic changes. I would give anything to have the last 3 weeks back so we could plan a big celebration like we have for the last 14 years. This battle is draining physically and emotionally. I apologize for being so selfish and all about me. It's Kaylee's Day and she had a good day!

The Toughest 24...

July 9,2007 - We got our results back today from our tests friday and they all show leukemia remission and no liver cancer. I had to hope for the best and prepare for the worst. I was on pins and needles for the last 24 hours. I was numb 17 days ago while we waited for the type of leukemia. We were diagnosed with A.L.L. and could of had a much more concerning type that wasn't as treatable. But like I said we were numb, and the wait was as surreal as the whole incident.

This wait was one that had reality to it. A quick sentence of "its not good" was always a possiblity. I have Tammie who is so positive that it boggles my mind. But I feel as the head of the family that I have to gear myself for anything.

Our prayers were answered for atleast a day. We can only take it one day at a time, but I am so grateful that we got the news we wanted.

We Need Answers...

July 6, 2007- We are checking into the hospital today at 12:00 pm. She got the results from the scan and it looks her liver texture is changing so we will have the biopsy and hopefully have results on Monday. She is getting a bone marrow, and chemo this weekeend. They want to do observation on here so there's no bleeding and here levels don't drop. We also are going to have her hair cut this evening.

Kaylee's hair turned out beautiful. She was in good spirits but broke down at the end of the night. She says she is tired. Tired of treatments,exhausted, and tired of looking so sick. I explained that we have a long road ahead. I truly think something really good is going to come from this. Its hard to convince someone that their pain may be a gain for someone else. But we have to stay positive!

A Long Day...

July 4, 2007 - Our day and night was relaxing. I was so proud of Christian. Christian is my 11 yr. old boy. He could of easily went somewhere else today but decided to stay home with his family. He was invited to several places but he wanted to be with us. He had so many fireworks because our family owns several firework stands in Kansas City. They were very generous to him.

Unfortunetly Kaylee got a nose bleed and we had to pack up and go to the E.R. @ Childrens Mercy Hospital. The 4th of July would have to wait. We arrived at 10:30 pm and were released at 3:00 am. Our next appt. was set for 9:00 am the same morning, but we had to reschedule because we were out til 4:00 am and KK (Kaylee) would not drink the dye that was necessary for the CT scan scheduled at 9:30 am. We decided along with nurses just to arrive at 12:30 pm and take it from there.

Christian had to pack up and go with grandma and Uncle Steve. He wasn't moaning or hollering as he usually would. He is worried about his sister. We all are.

We arrived at the hospital on time at 12:30, and they took Kaylee to radiology. We waited around for directions. They informed us that Kaylee would have to drink 30% oz. of dye and Kool Aid. I knew and so did Tammie that this would take hours if it took place at all. The staff decided to run a hose down her nose to her stomach. It worked but not before Kaylee got sick.

Tammie left at 4:15 to p/u Christian so he could make it to his 6:00 pm baseball game. I stayed with KK. Tam & Christian arrived right before the game was to start. Christian was to pitch but arrived too late so he didn't. We are all effected by this cancer.

My sister Kelly picked us up @ 6:00 pm and we went to Los Corrals for dinner. Kaylee had her usual all pork burrito with rice. She looked weak and was very tired. We got home at 8:00 ish. Our day was long but Friday is going to be tough.

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ME

I'm sad this morning. I woke up and found myself sleeping by myself. Tammie slept with Kaylee last night. I feel so helpless. I can't do anything to ease any of our pain. Tammie is so scared and upset. Kaylee is tired and exhausted. Christian is almost alone because he hasn't been able to talk about it. I'm trying to fight everyday just to be strong. I so badly want to fix everything but can't. I want to make the people I love know that everything is going to be fine. But I'm scared.


I just want my daughter to get strong. She's almost 15, and I just want her to get healthy. Please say a prayer for my daughter.