Let us out...

We received the news that we won't be going home. We have to stay until Kay can eat. We hope tomorrow but we agree that she needs to get her strength back before we leave. The snow cut my stay short at the hospital. I also had to get home for Christian because he has stayed home sick from school the last two days. I delivered some KFC to Tammie. We ate lunch together, Kaylee nibbled on some potatoes, then I left.

I struggled through the snow and ice to get home. We are holding down the fort while the girls are being held at the CMH lock down. I thank God that CMH is in Kansas City. I am 25 minutes away from front door and four floors away from Kay. The comfort of knowing we are so close, is priceless. We are on a wing of the hospital that is for bone marrow transplants. They are admitted for eight weeks. So our situation could be much worse.

Kaylee is holding up well. We had an incident this week that involved an area of the sickness that we've tried to overlook. Kaylee's cheerleader sisters are having a party this Saturday, she wasn't invited and it hurt. Kaylee says it doesn't hurt and I believe her. But we can't figure out why her coach, teammates, or one of the dozens of parents didn't mention it. I assume they think she is too sick or they just want Kaylee to focus on her recovery, but an invite would have been nice & huge. She is segregated from the friends she loves. Life is going on, as it should, but we have a kid who is living on the fourth floor of CMH and would like to be included. For future reference, we are all over this sickness, if we don't think Kay can go here or there we'll make that call, but please include my kid. We are concentrating on the health but Kay's social well being is important too. As a parent you want to let people know that an invitation or an occasional visit is OK. Kaylee is conscious and she's Kaylee. We just have a temporary roadblock and we'll be just fine. But as a parent you want your child to be included or atleast have an option to participate. This sickness is tough. The health, social, and spiritual aspect is very dynamic. We are learning as we go forward and I'm sure it's just as confusing for spectators. Just remember that it's Kay's health that has taken a detour, and not the fifteen year old spirit.

Unexpected Detours...

I'm sitting in the hospital. The good old fourth floor. I never thought that I would be a regular on the fourth floor of Children's Mercy Hospital. This moment in time will come and go but it will be remembered for a life time. There are times in life that we can go back and remember our first day on the job, a whirl wind romance, or a new place to live. The common thread with each of those is the unfamiliar day. Something different. A new routine. Each has a memorable element to it. Once these things become routine, they become old news. I'm not sure this will be routine or old news.

This is new and old at the same time. It has a traumatic taste to it so it has us on the edge of our seats. We are up then down. Our days can go into a tailspin, or soar high. As I sit here and watch my child struggle it never gets easier. The dry lips, bald scalp, and deep medicated sleep are a strong reminder that we have sickness at our steps.

Today I looked at Kaylee and then I looked at Tammie and told her that I would have never predicted that we would be sitting next to our beautiful daughter as she fights for her health. If you would of told me that we would be hairless at fifteen and eighteen pounds light, I would have lost it. I sometimes lose it when I think about the pain it has on Kaylee. I use to think about the pain it would have on me, but now that it is our reality, it has nothing to do with me. The hurtful thing is Kaylee.

Unexpected detours have emerged. We are traveling the road to recovery. Its amazing how resilient the human body and spirit is. We were blind sided but we have managed to get to our feet. Our steps have slowed but I expect to be jogging through life again. If you are ever hit with a condition or with bad news, remember that the shock only lasts a short time. It's what you do and how you respond that is most important. We are sitting next to our little girl as she takes this detour, we didn't pick this road but we'll navigate through it as a family.

Titans...

The Lee's Summit West boys won their football game today. They upset the Parkway Central boys by a score of 35-0. This pounding produced the State Championship Trophy. Great job guys! This season was mixed with emotions. On one hand it was hard not having Kaylee out there with her team mates. But on the other hand it was so special and therapeutic when we could attend the games. It was a retreat from our home.

We watched the game in my bedroom as our team dominated the field. It was very comfy. It was good family time. It was care-free. We laid around all day. Then sometime around 6:00 PM me and Kaylee went to the Sprint Store. My phone had finally arrived and we got it programed. This took an hour, and then we headed to the local Price Chopper. We spent some great quality time at the store. Kaylee knew some of the clerks at Price Chopper. Kaylee is so sweet to watch when she knows someone. Kaylee knows a lot of people in Lee's Summit.

Well, I'm done writing and I hope everyone has a great night. Way to go Titans!

Appreciation Beyond Words...

I want to thank you Mary Hayes. My daughter had a wonderful time tonight because of you, and your kindness and generosity will not be forgotten. Although I've never had the honor of meeting you personally, I just want to say thank you so much. Tammie has said so many nice things about you that I look forward to meeting you soon. I admire and appreciate your kindness.

The jewelery event in honor of Kaylee was touching. The Independence Center event was an event that my girls looked forward to for weeks. I'm aware of the time you invested in both projects and we thank you. I forgot to mention that the event was a huge success. Congratulations!


The gift cards for Kaylee were great because she got out and enjoyed the shopping. We can't tell you how important it is for us to see our beautiful daughter out applying her taste while shopping. I've slowed down enough to really appreciate the style and grace of my loved ones. To watch them do simple things are more important then ever. To watch Kay's nose as she sniffs a squirt of perfume. Observing as she takes a bite of her food. To watch Kaylee drink pickle juice and truly enjoy it is amazing!. All these things might not have been too important months ago but it is priceless now.

One last thing, the Vemma Drinks will help with Kaylee's recovery. We just might get her weight and strength back sooner then we thought. I don't want to bore everyone with all my new appreciations, but appreciating is good. So I have to say, Mary Hayes, we appreciate you more then words can say! www.myverve.com/healthy_energy

Children's Mercy On Line 1...

We received a phone call asking if Kaylee wouldn't mind checking into the hospital on Wednesday instead of Tuesday. Yeah! This means that Kaylee can go to a Pep Rally if the school has one on Tuesday. School is released on Tuesday for the Holiday and we assume that there will be a rally for the boys on Tuesday. We can go. That is so big for Kaylee.

I want Kaylee to be available for some of the celebration or festivities. To think that she would be in the hospital is bad enough on Thanksgiving, but for her big Championship was hurtful. At least now we can take part in the events leading up to Friday. One event is better than none.

She is still sleeping, 2:40 PM, so I'll have to wait to discuss our options.

Things have a way of working out. Last year we were geared for a Championship, but we got beat. Webb City put an end to our season. This year was going to be the one and it is. Unfortunately we didn't see the cancer coming. We take it as comes, if it's good or if it's bad we don't care, we'll work with it or we'll work through it. Peace!

On Our Way To State...

The Lee's Summit West Titans are heading to the State Football Championship. The game is in St.Louis this next Friday. We will be in the hospital fighting sickness but we wish our boy's good luck. This was exciting news for Kaylee but I wondered if it hurt. She smiled from ear to ear when she found out the Titans were in the big game. I smiled but hurt inside. This child lived for the games and the cheerleading in her life. The girls called when they were at the game and Kaylee could hear everyone screaming with happiness.

Kaylee takes pride in being a cheerleader for the school. She was a spotter but we're told that the doctors don't want her spotting when she does go back. There's to much risk with the potential bruising and the possible harm of having 100 plus lb. girls zipping through the air. We could careless. We just want her back and any role on the field is fine. Spectator, cheerleader, or referee.

Kaylee said she wished she could sabotage her hospital stay so she could go to State but we are certain her counts will add up this Tuesday and she'll be admitted. But who knows. I wish Kaylee could give the boys a pep talk because I'm sure she could speak volumes about courage, strength, and fight. Hell, I'd give the speech for her. It's sad that she won't be there. But health first and celebrating second. I hope the cheerleaders and football team can find away to include Kaylee even if she's not there. Go Titans!

Jet Black & 100

Kaylee slept yesterday. She was resting and sleeping her time away. Her best friend, Alyssa, visited the hospital yesterday and stayed for hours. It made me feel good that Kaylee was sleeping, but knew her best pal in the world was sitting next to her bed all day. I'm sure she takes mom & dad for granted, she knows we'll always be there, but to awake and have that best friend next to you is second to none.

They are doing tests today to see if Kaylee is becoming diabetic. It is common for children fighting leukemia to become a diabetic. We hope she isn't but will deal with it if she is. On a better note, Kaylee's hair is growing back at a rapid pace. It's jet black. I'm excited to see if it will be curly, straight, or the same. We also hit 100 lbs.! I almost forgot. We have gained back some weight and have hair growing, not too bad for a family boxing leukemia.

Tonight is the school play. I am a little nervous. I will have to say a few words to a crowd of 800 patrons. My public speaking hasn't been the talk of the town in recent years, but I'll do my best. So if you're in the neighborhood tonight, our production starts at 7:30 PM, the doors open at 7:00 PM. Please come and watch if you can. Have a great weekend.

West Side Stage...Confusion Stage

We are proud to announce yet another generous act from the community. On Friday November 2, 2007 the Lee's Summit West Theatrical Department, West Side Stage, is dedicating a performance to my daughter. The Comedy of Errors will be this Friday at Lee's Summit West High School. The performance will begin at 7:30. Everyone is invited and I encourage all to attend.

Thank you to Mr.Martin and all the kids who voted to donate the nights performance to Kaylee. We are honored and touched by your thoughtful generosity. I can't explain the warm feeling I got when Mr.Martin said all the kids wanted to honor one of their own. We thank you.

I have to admit that I've been overwhelmed and a bit slow lately. My thank you cards are delayed again. I also must confess that the kindness has made me somewhat confused. I appreciate everything, but foreign to the receiving part. It's a stage or phase I'm told, but I don't know how to react to the kindness being tossed from every direction.

Sometimes I feel like a failure if I accept the giving. I'm asking people to donate their blood (Thank You Again for taking that huge needle!), drive to our benefits (Sorry about gas prices), and buy our t-shirts (Hope that large was a true large). Everything has been put together by kind people, but If I accept cards with money and benefits what does that say about me. Does it make me a failure? Do people say that poor Kaylee Quijas? Do we fall in the indigent category?

We are not indigent and we are not begging. We are just an average family who has hit some tough times. We have been out of whack but are climbing back. Every one's generosity is greatly appreciated and has helped us tremendously. I guarantee everyone reading that I will pay it forward to that next family that needs help.

This blog will be one that I will regret in the morning. But I want everyone to know that my slow response to emails and phone calls has been due to my confusion over this embarrassing issue. I want to protect my family and I want all of us to hold our head high. I want no regrets after we get through this. Please forgive me If I've put our problems on you. Thank You!

Dolce & Gabbana

So I haven't written a blog in days and now I'm knocking out two in minutes. A quick story. I went shopping for perfume today. Kaylee wanted Dolce & Gabbana, Light Blue. So I went to Macy's and found the Fragrance Department. I was picking out my purchase and had a moment. I was getting perfume for a child that wants to feel good. She could have worked me for a new phone, ipod, or computer but she wanted perfume. She wants to smell good. She wants to look good. And she wants to feel better. What a moment.

I never want any of you to feel it. I'm sorry, I want no one to go to Macy's and purchase their fifteen year old daughter, who is battling cancer, a bottle of Light Blue. It was special but avoid it, believe me!

So back to the story and back to a blog I wrote some time ago. I'm going to the cashier with my deluxe box that carries perfume, lotion, shower gel, and an on-the-go bottle. Little bitty bottle. I give the box to the cashier and start crying. Crying, again! In public. The lady takes my box and noticing my teared up eyes, asks "who's the present for?" I tell her and she says "I feel your pain, my twenty one year old son passed away three years ago from Cystic Fibrosis."

I wiped my tears and we had a moment. Then I walked out thinking what that mother told me on the cancer floor at Children's Mercy Hospital. "No matter how bad your story is, someone has a worse one."

My prayers are with you.

Put It On Your Calendar...

We are going to have a get together on Friday, October 12, 2007 at Raoul's Velvet Room . The night will consist of drinks, conversation, and the best band in Kansas City - theZeros - led by former Shawnee Mission North Alumni Brad Gaddy. The get together will also be for a good cause, my daughter. The owner of Raoul's Velvet Room - Shawn McClenny - wants to donate the door cover charge to the Kaylee Quijas Fund. So please mark the date and attend if you can. I am aware that it is Reunion Weekend, and events are planned, so if you head to football game that night, Raoul's is about three miles from the S.M. South Stadium.

I thank Brad Gaddy, Shawn McClenny (owner of Raoul's and Fuel), and all of our friends that will attend. Thank you to everyone reading, to all of my friends, my old classmates, and everyone who has taken the time to send an email, to mail a card, or place a nice phone call!

I promise everyone reading, if anyone ever needs my help, today or tomorrow, please know I will be there, do not hesitate to contact me.

Monday...

One of the side effects of chemo is mouth sores. We've been lucky up to this point that Kaylee hasn't been struck with them, but something is wrong today. Her little tongue is swollen and she has pain. We think the sores have arrived. It's so painful that she is crying, and has been all morning. There isn't any thing we can do. The swish & swallow medicine isn't working or helping. So what do you do?

We thought we would sneak by the sore section of this disease. But we were stopped. Its not the first time. We thought we'd get by the hair loss section. But we were stopped. This disease is so painful. Physically and emotionally.

The pain is hurting our baby and you just want it to stop. But it is none stop. Its emotionally draining knowing your kid has cancer but when these additives or side effects start showing up it physically makes you sick. To have a fifteen year old child ask for help is heartbreaking.

I have to be honest. It could be any fifteen year old and it would be devastating. But when it is yours...

Predictions

We won like I predicted. Kaylee had a great time and stayed with the cheerleaders on the track during the game. She sat the entire time and looked as if she really enjoyed the evening. I worried when the temps dropped. She was ready to leave at the beginning of the 4th Quarter. We came home and relaxed.

Kays temp keeps rising. 99. 100, 100.5, 101 and the next .5 puts us in the hospital. So I predict we will be in the hospital some time tonight. I'm so comfortable right now. I just got home from my brother-in-laws 30 year work reunion party. He is a KCK cop who has had thirty years active duty. Nicky Vega.

Back to the prediction. Sunday night is relaxation time. Relaxation for everyone. Even for a child fighting cancer. So please let my prediction go to hell , and let that temp drop. Please. But if I have to, I'll be the first one in the car ready to go. My reality. My hand. My child.