Sunday, November 30, 2008

One last article...


http://www.kchispanicnews.com/images/v12n11/kchnv12n11.pdf

Wednesday, November 19, 2008

An Egg McMuffin Please...

I had to take both kids to school this morning at 7 o'clock. Kaylee's car is acting up and Bubba missed the bus. I decided last night that I would wake extra early and go to McDonald's for them this morning. A good hot breakfast, especially from McDonald's is a treat every once in awhile.

My son is such a good kid. He smarts off like most teenagers and makes poor decisions at times but he is good. I proudly say that because his heart is so good. His innocence amazes me. Most parents might read that and think I'm naive but I'm not. He is an innocent little man. He'll still hold onto me when he gets scared, as he should. He will cry and wants to be held when he doesn't feel good. He is so different than I was at his age. He is progressing just the way I want him to. He only worries about being a kid.

I've confessed to crying most of the entire last year. But when I was Christian's age I had to be tough. Or at least pretended to be tough. I was at public schools in the inner-city in eighth grade. I thought I knew it all. I'm sure I had the same qualities as Christian but I didn't show them as much. I had to fight, literally fight when I was his age. So I had this whole tough 13 yr-old thing down. Unfortunately, it went on well into my 20's. When I left to go to California in 1996 I hadn't cried in years. I was hardened. I didn't care. I thought life was about getting what was mine and I was content in that thinking. Then the move humbled me. I realized that I wasn't cool and I was just a guy who acted like he had it all together. But it's your family and the people you surround yourself with that make who you are. So if Christian has a good heart and is innocent then we've done good.

Kaylee is a brave one. She goes and endures so much that I'm amazed by her ability to never complain. She get grumpy and her moods alter with the different drugs but she has become a survivor. I think it has hurt at times that her innocence was lost. She had to deal with this or that and most dealt with her mortality. Scary thing to have to confront. At any age! The Kerry Magana thing scared here. She thought she wanted to go to the funeral of her friend and decided she couldn't. Kaylee will never tell you why but Kaylee is afraid of dying too. So hard to write but she's intelligent enough to know that this sickness is wicked and can blow in different directions. I applaud her for being there in mind but not in presence. It was too close to home.

I live in a house where my actions or deeds hardly raise an eyebrow. I sometimes think they think I'm Superman. Maybe they expect great things out of me so they are hardly surprised by anything. I guess that's good to think it's not out of the ordinary for your dad to give to others when he can. I'm sure there are others that wouldn't donate, participate, or obligate to nothing. I choose to help if I can, because God has been good to me for years.

Before I go I have to tell a quick story. Tammie is not much for words. She isn't a sappy girl, clingy, or needy. Tammie never seems to be amazed with me. Again that sounds like she deprives me but she doesn't. She knows when to say "Hey good job" but for her she shows it in different ways. On the day that I gave the speech at the LLS event I saw something out of her that I never have. First I think she was worried that I might lose track, stumble, or collapse. But when I didn't and I kept going on and didn't miss a beat (for the most part) I looked at her and she had the biggest look of pride on her. She kept nodding her head as to say keep going baby. I can't explain how nice it was to have this person who has lived with me through good and sickly bad times feel a sense of honor. I felt like she felt honored. God knows she would have to be dragged on a stage, but to hear me do it I think she felt like it was part of her giving that thing to all those guests. Who knows but that's what I think and I can't think no more!

Tuesday, November 18, 2008

Monday, November 17, 2008

Leaving...

Today Kerry was put to rest. I rested after we came home. I was tired. I told myself I wasn't going to do anything after the funeral. It had tired me. Last night I could not sleep. I had an ache in my stomache. I find other reasons for it, but I think it was, I know it was, all this sickness and the toll it's taken on me. I have no room to talk about the pain and sadness but it hit me. I was involved.

I will probably take a sabatical from writing until the next thing. I usually find something that sparks something in me, but I'm going to take a rest for now. I was honored to be a Pallbearer for Kerry. I had Kaleb Kern from AdAesthetics make the video for the family that played throughout the service. I was impressed with him being there and working this projector for the family. He never met her and yet he did that and also built a websit for her months ago. Kaleb you're alright! Chewy who does my installs drove the family in the limo. He too was an honor to watch at the funeral. He got emotional as he drove the mother, Claudia, from the cemetary. He was crying and I thought what good people. Kaleb, Chewy, and countless others who gave to be giving and for no other reason.

Christina Jasso you are an angel. You handled every arrangement, stayed at the hospital, and pulled money from your own funds to help when it was needed. I learned so much from this. Giving is good. Helping is good. Loving a family that's not yours is good stuff when the love is needed. I was blessed by this, I was blessed today from words from different people. Something inside me matured today. I made a small difference in a famiy's life and I felt good doing it.

I have to end with a observation. I don't know how anyone could leave their child at a cemetary. I know you have to do it but it was the reality. I would never want to leave my child alone. Tammie said it perfect that your body is only a vehicle but I wouldn't want to leave my child's vehicle anywhere. That was the hardest part for me. How hard would it be to drive off and leave that child you've loved. It was tough to watch.

Saturday, November 15, 2008

The hardest thing...


I went to the funeral home yesterday to make arraingements for Kerry's burial Monday. It was the hardest thing I've ever done. Claudia collapsed on the way in. She cried and sobbed, prayed and yelled. I tried to be strong but I cried a couple times.

It was me, Christina Jasso, and Claudia. We got everything handled. I didn't do much but I was there. I feel blessed that Claudia had me and Chrstina with her. Claudia had me and Chrstina. What would she have done if we weren't there? Scary. The fact that the funeral plans were for a 15 yr-old hurt. I know that most other parents, especially one's with children fighting leukemia, wouldn't have traveled to the funeral home. I know because I've had several people ask me what I'm doing. Well I'll explain it again, Cluadia had no one there besides me and Christina. If I hadn't of went then it would have been just Christina. Christina was introduced to Claudia through me. So tell me what would you have done? It was hard for me but something I had to do.

I hope some of you will go to the funeral. Kerry was tough and it was an honor knowing her. Please come if you can from 9-11 Monday at

Bales Baptist Church
3414 E. 12th St.
Kansas City, MO

Thursday, November 13, 2008

My connection...

I've explained it before but I'll do it again for anyone who may have missed out on how I became part of Kerry Magana's life. My daughter and all of us first met Kerry while we were in for our first admission at CMH. I liked Kerry immediately. Kerry had her hair growing back and it was all stubble. So I never wanted to look at her in case she thought I was starring. It turns out she could careless and often told Kaylee that losing her hair wouldn't be as bad as she might think. Kerry talked with Kay and it made me feel good. Kerry and Kaylee are around the same age.

I was still threatened by the disease so I didn't really care to meet Kerry's family. I wanted to stay away from all ill kids just in case they were to die. So that's what I did. I kept my distance. In January I heard Kerry relapsed and I saw her in clinic. She was there by herself. She had taken the bus to CMH. I thought about Kaylee and how things were so different for the two girls. Kaylee had two parents and Kerry with only one. Things are tough for a two family household, I couldn't imagine one parent trying to get everything done.


Claudia, Kerry's mom, would arrive at the end of the day to sign off on the treatments. When we were in clinic, I asked Kerry how she was getting the info out for her Bone Marrow Drive. She told me she was walking to restaurants and posting her flier, if they would let her, in the windows of establishments. Retail, restaurants, anyone. That's what grabbed me.

This child was pounding the pavement to save her little life. She was a fighter. I immediately got involved. I with the help of Carole Damon emailed, called, and orchestrated a blitz. I called the Hispanic newspapers, radio stations, and TV affiliates. We were going to find this kid a match. Joe Arce from the KC Hispanic News publication came and did a story on the day of the drive. The weather was terrible. The turn out was so so. It was icing and snowing. The efforts turned up a donor. I'm not certain if it came from the registry or the drive itself. But there was a match. Not a perfect match but a match.

I was done. So I thought. One day I was in clinic and Claudia and Kerry were there. We were in the GI department waiting for our girls to get released from being put under for a procedure. It was there that Claudia looked at me and said "I need help." I had already helped in the bone marrow drive, but never said two words to Claudia. I did once when I called their house to tell them they would be on air at a radio station in Argentine,KS. I felt like a fruit cake calling this little girl at home so I explained to the mom why I was calling. That was it as far as communication with mom.

Kerry at this time looked so different. She was sick. Her bone marrow transplant was planed for April or May but was postponed because of the relapse issue. When her mom told me she needed me to help with the visa I was all in. I called my partner Zach Lund who is an attorney. He told me to call Mike Talbot a State Rep. Mike told me to call Emanual Cleaver's office, and then I called the Guadalupe Center. That's were I met Christina Jasso of the Guadalupe Center. Together we started pestering, stalking, and harassing anyone who might be able to help. Joe Arce became involved again and we started to get momentum. I called Sarah Visomirski at KCTV 5 and she sent an email to Maria Antonia. Mary Sanchez with the KC Star was next. The exposure helped.

I donated a car to the family. It wasn't pretty but it was wheels. When I announced to the family that I was giving it to them so they could eliminate the bus, Kerry asked "is it an 6 or 8 cylinder?" I was shocked. She said "because gas is real expensive for a 8 cylinders." Kerry was looking out for her mom. She knew about cars too.

It was an honor to be part of the family and it will stay with me for a life time. I met all sorts of kind people along the way. It was meant to be. I talked to Claudia an hour ago. I told her I was here if she needed anything. She said "I know you are Michael."

The latest story from the Kansas City Star http://www.kansascity.com/276/story/889750.html

KMBC 9 Tribute

Kerry Magana

04-22-1993

11-13-2008

Kerry passed away this morning. She is in a better place this morning. Her body couldn't continue anymore. They called Kerry the butterfly and I think she is flying right now. Most of you know her because I've told you about her but if you would've had the opportunity to meet her you would have been impressed with her. She was beautiful, she was witty, and she was knowledgable about things. She told me one day while we were in Kaylee's room that God wouldn't give her more than she could handle. Kerry was right.




The last time I spoke with Kerry I told her I would throw a party for her. We would do it Latina style. Bands, food, and a fiesta. Her favorite band agreed to play and I was going to ask Fred Cannon at the Uptown Theatre if he would provide the stage. That night there must have been 20 people packed around and Kerry announced to the room "Michael Quijas is going to have a party for me!" That was my last night with her, the last night I talked and hugged her.





I am not sad right now. I feel relief she isn't in pain, on a respirator, or in a coma. She is with God and she is in paradise. I feel for the family but I'm glad grandma is here to help her cope with this horrible loss. Kiss your kids today and hug them tight. Sickness isn't anything we think we are going to have to deal with. It happens to others but I'm here to tell you that it can happen and it does happen. Thank you for the prayers and thank you for listening to me about my friend Kerry Magana.

Wednesday, November 12, 2008

Pray

Please pray this morning for a friend of mine, please pray for a family, and please pray for a miracle. Kerry Magana needs us today. Her little body is tired and unless something changes today the doctors say they are running out of options. It's in God's hands.

Tuesday, November 11, 2008

So what...

So what do I do? I am engrossed with wanting to help spread the word about childhood cancer. I am on a crusade to help families struggling with this terrible disease. I feel obligated to do my part. If you've never been included in this fraternity I don't think you would understand. It consumes me. Am I sick?

I confess because I feel that I have a voice that can be heard. If I speak loud enough than others will hear. All this scares Kaylee because she wants to move forward, but I want to ease the pain of anyone who has heard those words - it's cancer. The pain, the fright, the confusion will make you light headed. To hear a group of doctors and nurses tell you professionally that your child might die is numbing. Ask anyone who has heard it and they will tell you the same.

Recently I've been confused. I want to run from the scene when I hear that death is near one of the kids I help but I'm here providing something their parents might need. Support. I too want to distance myself from the reality of this thing, cancer sometimes kills, but I feel inside that I have something in me that can do good for others. My schedule allows me to do more than most, my resources in the community are valuable, and the feeling I get when I give something is internally rewarding. But do I take time off because my association with the disease is too close to home.

I've always been amazed when I come across a person I grew up with who eventually found God. Me personally, I've never lost God so I wasn't really searching for him. But when you see people who say that they had a calling, well then I wonder is this my calling? It might be too late to go to medical school, but this stuff I do is the next best thing. I feel inside that I make a difference. I know I do. But since it scares my daughter is there a balance I should shoot for? I try not to talk about the sickness of kids by Kaylee or Tammie but it is sickness that I spend my time with. So what do you do?

Sunday, November 9, 2008

We succeeded on our part...


I am happy to announce that we successfully got Kerry's grandma here Thursday night. Her flight came in around 7:30 pm and the family was brought to tears when they saw her. I can't begin to tell you how happy I was. It was a conclusion to the countless hours of work we put in to get the family the support they needed at the hospital and at home.

"A Girls Night Out Limo" sent a car to pick up the family so they could meet grandma at the airport. Dan Stewart donated his time to drive the car for the family. None of the occupants had ever been in such a vehicle and it was special to see them get there in comfort and style. I was invited to ride but opted to follow in my car. I wanted them to be at ease and at peace.

We also started construction on their kitchen Thursday. To say I started the construction would be an absolute lie, I'm not engineered or skilled to do any kind of construction but found resources to help. Christina Jasso, who has become such an important part of the Magana family, got her husband to do the tile, plumbing, and electrical work. The Jasso's are awesome.

Laton Crane, the owner of Calloway Construction, was kind enough to hang the cabinets at the last minute for me. Ed Woods, an electrician and parent of a cancer survivor, has also agreed to go to the house to hang new lighting fixtures. We just need a person to glue the granite tops and cut a hole for the kitchen sink in the granite. So if any of you know anyone who does that kind of work please let me know. My Thursday was very busy. I rounded up construction crews, gave a speech, and ended my day at the airport. It was one of the most fulfilling days I've ever had.

The kindness from everyone has been rewarding to me. It has renewed my faith in other people. Seriously, I have to say that I would have probably not noticed the kind acts nor would I participate in such kindness if not for the sickness. I feel comfortable to say that I was self absorbed before this illness. In the past I would have given you a ride to the hospital if you needed it but would have driven off at the first opportunity. Today I'd walk you in, wait with you, and make you comfortable! Things have a way of changing you.

I titled this "We succeeded in our part..." now it's left in God's hands. Say a prayer for this tough child.

Friday, November 7, 2008

Wednesday, November 5, 2008

Love...

I give the opening speech tomorrow at the Leukemia and Lymphoma Society's National Leadership Conference. There are several hundred people expected to attend and I'm a little nervous. I was going to give a speech about this sickness but I think I'm going to talk about something more dear to me. My new found appreciation for love. That's right, I'm going to talk about love. How I've found renewed love for family, friends, and community since this illness. I figured I could tell everyone about how I advocate for children, work with government officials, donate cars, and insure children without insurance but they probably hear that same thing in every city they attend. I'm going to go deeper than that. I hope I can pull it off.

I am so honored that someone thought of me when they thought of potential speakers for the conference. It is a little scary when I think of the numbers but I'll be fine. I hope I can get these people to fall in love with their families, their work, and lives again. I hope no one ever has to get there by way of sickness!

I was reading my writings from Christmas night and I was so appreciative and comfortable that night that I wrote a speech and swore I would read it if I ever found the stage big enough. I am not going to read it but I want to express that comfort that derived from my love. It was magical my friends. It was the best night I've ever had. Serious. I was at home with my family and we relaxed and recovered from an exhausting hospital stay. We had narrowly escaped the hospital the day before. The relief that came with our beds and the comfort of our own surroundings was incredibly sweet. I can't begin to explain it. If I hadn't experienced the sickness I bet that appreciation might not have been there. I might have chalked it down as relief that the hectic holiday season was concluding. This particular night had me thanking God that I was able to be with my family - warm, full, and comfy.

The motivation for my speech...3-02-08

(My fake speech if I ever had the chance)

Thank you for joining me tonight. I want to talk to you today about something besides courage, fortitude, and fight. A topic of many discussions. I want to talk about love. I speak of love tonight because I feel it, I feel it with every ounce of me.



As a child you look across the table at your parents, siblings, and family and feel that thing that you know as love. As a kid you lay your head down at night you can't wait to wake and feel that love all over again for another day. When you hit a certain age you write the word out of admiration. We often draw the heart to signify our love. We confide to our best friends and family when we think we find love and when we whisper those three words. I love you.





Eventually most will set a date and time so they can announce to the world the newfound love they have and the plans set for a life of love. This silly word now becomes serious and we start a family. As we become older, love is a subject of home, heart, and mind. Rarely spoken of outside the family and our circle of friends. Maybe this is an age thing. Our love becomes our guarded assett.




Tonight I open up outside the home, and ask you to be accepting. I might speak of this thing called love and some might say not here not now. Well I say "why not?" I am in love and I feel love, and I want to discuss my love. It just happens to be the love of my children I want to speak of.




I had love before my kids, but the love I felt after the kids is the love that is the most worth while for me.