|
|
|
     |
||||||||||||||||||||||||||||||||
 |
 |
|||||||||||||||||||||||||||||||
|
|
Copyright 2004 All Rights Reserved Jenny and Andrew Scott (c)
Heroes for Children's official website is up!
Order your calendars and cookbooks right away!! www.cafepress.com/raiseawareness
Thanks for a successful Light the Night! If you would still like to donate, please visit www.active.com/donate/allieandsam
Other Jenny Posts 1, 2, 3, 4, 5, 6
Wednesday, January 12th--HAPPY BIRTHDAY ANDREW!! I love with all my heart!
8:45am--Hey, Andrew--will you please separate out my journal again--I think it is getting slow to download again. Thanks!
There comes a moment in your life when you realize things will never be the same. For me, that moment hit me like a ton of bricks Monday afternoon. All along, I have answered "no" when asked if I was going back to teaching. I didn't think it bothered me. I've been planning on quitting subbing for quite some time, making next Tuesday my final day to sub. Monday, I got email from the French teacher that replaced me at Rice asking if I would be available the end of January. My first instinct was to say no, but then I reconsidered. If this was my last day to teach, wouldn't it be great to have it be some of the students I had last year. Those kids in the 7th grade kind of got a raw deal with me last year since I was pregnant, then gone on maternity leave, then gone with Allie's cancer. I would love to have my final class be a class of kids I know. So, I finally responded back to accept the position. In doing so, I also copied my former principal and vice principal, letting them know my decision not to return to teaching. I didn't realize how that would affect me. Just writing the words, the tears welled up. Finally, I broke down at my desk and sobbed at work.
You see, I've wanted to be a teacher as long as I can remember. Now, that dream is over. Doesn't mean that it is gone for good. I realize the stock responses I will get from posting this. People tell me, "but you are still a teacher, just a different kind." And I do believe that is true. Someone else will say, "you never know what may happen and if you will ever teach again." Maybe, I will not close the door completely. The reason it hit me so hard is that it is a real loss in my life. I poured my heart into teaching, just as I poured my heart into being a mom. Both of those, at least for the time being, are gone for me.
Yet, I cannot ignore the fact that I have been called to do something else with my life right now. Between part time work at the Leukemia and Lymphoma Society and establishing Heroes for Children with Larissa Brewton, I keep very busy. Today, I have two meetings, tomorrow two as well. We have a board retreat this weekend, 5K committee meetings every two weeks and a Volunteer Night on Thurs. Jan. 27th (see the post below for directions and details on how you can get involved with Heroes for Children--our volunteers are vital!). We stay very busy.
Annie Ormond, Fieldon's mom, asked me today if I ever missed 12 South. She knows I miss Allie, but she was referring to the floor itself and the life we led there. Funny to say, but Andrew and I both miss 12 South. We miss the relaxed atmosphere and the people. We miss feeling connected to so many people in the same situation. If it wasn't for families like the Ormonds and the Eisenbergs, we wouldn't have come out of that situation as well as we did. I miss being able to see my friends every day or every hour as often the case was. Miss Annie looking in on her way to the pantry, Sam's IV pole with his little peeking through our window. Oh man, he was so cute with that bald head. But, boy-you should see how much hair he has now! I saw him the other day at their house. He told me about getting IVIG at the clinic and seeing "Denarsky," his doctor Dr. Lenarsky. He told me he loves me, and I made sure Sammy knew that the feeling is completely mutual!
I need to get going for the day, but I wanted to post since I've been negligent on posting. To my Andrew---I hope you have a happy birthday with many happy dreams of our girl tonight! I love you so much and as always am honored to be your wife.
To Dana---thank you so much for your post last night. Our friendship means so much to me. Not many people can understand that level of understanding from one person to another. Not many people have that kind of easy friendship that we do. I am so grateful you came into my life, even under our circumstance.
To my mom-thanks for dinner the other night when I was down about teaching. No other person can understand that loss as well as you. You saw me work my whole life toward that one goal, and you have supported me through the change in the last year. Thank you.
Love to everyone. Hug your children today. I wish I could do it, but since I can't, I plead you to do that for your kids even more than usual. Don't get upset over the little things that your kids do to irritate you. Instead, be thankful that are alive and well to be able to irritate you a little. Do something fun with your children today--Allie's watching!
Love, Jenny Saturday, January 8th--
Please join us for our Volunteer Night for Heroes for Children if you are interested in volunteering with any aspect of our organization.
I'll write a post soon. Jenny Sunday, January 2nd--
11:00pm--The holidays have come and gone. Smoother than I expected given our circumstance this year. As we rang in the New Year with a group of our friends, we lifted our glasses (well, I spilled mine over my lap since I was slightly drunk--just slightly, right?) to a cancer free 2005. Since 1999, cancer has invaded our life. It took both my father and my daughter in less than five years (dad passed away April 2000). I want nothing more than a year without cancer in our home or in the homes of my loved ones.
And yet, as we start our year, I face cancer head on. I still work part time for the Leukemia and Lymphoma Society advocating for the program Pennies for Patients. I have been working tirelessly with Larissa Brewton on establishing Heroes for Children. I spend my day talking about or focusing some way on cancer. And at the end of 2005, I want to say that I was victorious this time in our battle.
Andrew and I are doing pretty well. We're sure to spend as much time together as possible, even if it is experimenting with making sushi and watching movies, as the case was tonight. Sometimes, we pick at each other more than we have ever done. We are more sensitive to things. However, we are more apologetic when we do. We remain conscience of the fact that marriages undergo strain during a loss such as ours. So, we forgive each other's eccentricities a little easier. He puts up with my mood swings. Poor guy, I got mad at him today in the middle of a Best Buy because I didn't want to be there. Instead of having just stated that I would prefer to go there another time and go home, I went on a tirade about how unnecessary it was for us to be there and how I would NOT stand in that RIDICULOUS line. OK, can we say melodramatic or what? He simply set down what it was he was looking at and exited the store with me. He knew I was in a mood. Of course, by the time my rear end hit the seat of our car, I realized what an ass I had just been. We laughed about it later tonight. Sorry, honey. I love you so much. Thank you for being the stable and sane one in our relationship!
At the end of the day, we are stronger in our marriage than we have ever been. In almost ten years, we've been through a lot. I know we will be together for many more years with, hopefully, more children (no, don't start the rumor mill, I'm not pregnant). I knew about a month into our relationship that he was the one. I knew I would marry him. Of course, I knew I had to be older than 17, our age at the time, and had to graduate high school at least! Four years later, we married. Five and a half years later, I still get that same feeling of love when I look at him. I still feel that sense of stability and security in his presence. I can't imagine a minute of my life without him in it. I am the luckiest woman in the world because he picked me. For some reason when we were 17, he decided to call me. We barely knew each other, went to different schools, and had very little in common. But, he called, asked me out, and as they say, "the rest is history." A great history too, I think, because it is ours.
Andrew--I love you. --Me
Sat. Dec., 25th--
**HEROES FOR CHILDREN WEBSITE IS UP--CHECK US OUT AT www.heroesforchildren.org!!!
10:35pm--Dallas Morning News Texan of the Year for 2004--Karl Rove. Congratulations, Mr. Rove, we are honored that our daughter is right after you.
Allie is actually the Reader's Choice #1 pick for Texan of the Year. Tomorrow, there will be another article about our girl including pictures. Andrew and I are absolutely honored and proud. To be on a list that includes such people as the woman against domestic violence, Dan Rather, and Texas military families is truly something to be inspired by. Allie earning the number two spot by the editorial board? Nothing short of amazing for us. We are thrilled!
Let me tell you a story about the scope of our daughter's influence. It brought tears to my eyes when I read this story. A woman in Canada named Sara learned somehow about Allie during her illness. Inspired by Allie's life, Sara felt compelled to get involved somehow. Racking her brain on what she could do, feeling helpless, as many of us do, Sara realized she could make a difference by putting herself on the bone marrow registry. Most people don't know if they will ever be called, but the chance is always out there. Well, this week, Sara got the call. A 19 month old infant fighting AML (Acute Myeloid Leukemia--same leukemia that Allie had) was desperately seeking a bone marrow donor. The baby, who lives in England, was named Sophie!! Imagine the irony in that one! Sara was a perfect 6 out of 6 match for Sophie. This Christmas, Sara has a "sore hip and a happy heart," knowing that she could possibly have saved little Sophie's life. Reading Sara's story, I was struck by the enormity of my daughter's life. A woman in Canada has possibly saved the life of a child in England--all because of an "round-faced, blue-eyed baby" in Texas!
Christmas went well. Sure, I had a meltdown. I have several a week, or more maybe. I miss Allie the most at night. Wed. night, I found myself unable to sleep. I ached for Allie. I missed her presence next to me in our little hospital bed. I miss waking up at all nights to find her kicking wildly and waving Sophie the giraffe in the air. I miss the squeal of delight she would give when I would sit over her and blow on her chubby belly. I miss staying up late with Beth, Karen, or Michelle, Allie's beloved nurses, watching her play like it wasn't one in the morning. So, Wed. night, I went into her bedroom. I laid down on her floor with her blankets, her "Princess Allie" pink silk nightgown, talked to Allie, and fell asleep. I found myself on her floor under two blankets at 1:30am, picked myself off the floor, and went to bed. Its not all the time, but the moments happen. I was fine the next day.
We spent time this week with our family. As I have said before, that is the most important part of the holiday season. On Christmas Eve, my mom, Bill, brother Jeremy, his girlfriend Debra, Mike, Angela, Josh, Joey (we call them "the Bubs"), Debbie, and her kids Hannah and Ben all joined us for dinner. Conversation was easy and the food was good. We all missed Allie's presence. There was no denying that it was a notable absence. This morning, Andrew and I made it to Mike and Angela just in time to watch the Bubs open all their Christmas presents. One by one, each child opened gift after gift with such excitement and delight. Of course, I couldn't help but think about all the Christmases I will not have with Allie. But then, I also couldn't help but think about the best Christmas I've ever had--last Christmas with my 8 day old baby. Lunch with my family at our house afterwards, and then Andrew and I were off to Ft. Worth with Brandy. Sam and Ethan wished me a "Happy Hanakuh Christmas" on the phone. We've been relaxing tonight, visiting with our wonderful family friends, Mary, Abby, and Maggie Albritton. Brandy is so worn out from chasing Abby (who is ten) across the backyard.
I will go to bed tonight missing my daughter but reminding myself of my blessings. Happy Holidays everyone! Jenny, Andrew, and our gorgeous Angel Allie
Wednesday, Dec. 22nd--
7:30pm--If you live in the DFW area, get Thursday's paper! Our Allie was #2 in the countdown for the Dallas Morning News' 2nd Annual Texan of the Year!!!
Here's the article. I'm anxious to see if there are any pictures in the paper too! (Lots of exclamation points tonight, I'm so excited for the life and legacy of my beauty and love!!!)
Can I just tell you how much I love this little girl? Love her to pieces. Miss her like you wouldn't believe. As we come closer to the Christmas holiday, please remember the things that are most important about this season--the reason it is, the love of your family, the need to appreciate what we have. Its not about the gifts or the lights. Really, it doesn't matter if you scramble to the mall for that one last gift. Your gifts are at home or in your hearts. Those are the greatest gifts of all. I know that Allie and Andrew are certainly mine.
Happy Holidays, Jenny, Andrew, and Allie's loving puppy Brandy
Saturday, Dec. 18th--
10:15pm--Its been the best year of my life. Last night marked one year with Allie in my life. Allie's first birthday has come and gone. And we survived. It was a good day. Andrew and I started off early by going to donate blood at Medical City. As we walked in to the lobby of the hospital, we were greeted with a Carter Blood Care sign announcing the blood drive "In honor of Doug Hale and In Memory of Allie Scott." Doug Hale is a brave Richardson firefighter fighting leukemia and searching for a bone marrow match. I've wanted to get on the bone marrow registry since hearing about Taylor Krueger in Iowa in need of a transplant. Yesterday, I had the honor and pleasure of meeting Doug Hale. It made the need for being on the bone marrow registry even more real for me.
As luck would have it, I have some of the world's worst veins. I've known this for years. It takes anywhere from three to six sticks to get enough blood for just a regular blood test. So, why? Why would I think I can donate blood. I don't know, but I so wanted to try. Andrew sat down to donate without any problems whatsoever. I was already a bit emotional just being the day. The first woman takes a look at my left arm and gets a little concerned. She couldn't find one usable vein. So, she moves me to another chair to check my other arm. Another tech comes out to help me. They tried for several minutes. I was squeezing that damn ball and making a fist as hard as I could. No good veins. Of course, I started to cry. The woman says, "Oh honey, don't cry. There's nothing to cry about." I looked at her and said, "Today is my daughter's first birthday, she died three months ago from leukemia, and I really want to give blood." "Honey, you cry all you want!" Several other employees came over to help. She found a vein that she thought was a possibility. "We can try, but I can't guarantee anything." We tried. She was right, no guarantee. As soon as the needle entered my veins, it blew. I have a nasty bruise to prove it. Disappointed, I burst into tears. The women there were so kind. Luckily, I was still able to get on the bone marrow registry with a finger stick. For people like Doug and Taylor, its worth it to me. According to the technician, "blood donation just ain't your thang." In other words, I need to leave the blood donations to those who are able. If you can, can you please help me out? I wish I could, but the bruise on my arm reminds me that no, I can't!
We left the hospital at 10 to attempt a few hours of work. I can't tell you that I was all together that productive. Checking the Friends of Allie msn board, I saw a post about Helen Garner. Beautiful Helen past away eight days ago from a brain tumor. I had read about her passing and had posted a message to her parents. The first look at her website hurt me. We have several pictures of Allie in the exact same bouncy seat. It hurt me to see another baby that had suffered like that. Reading her website Friday morning, I realized that Helen and Allie shared something else in common than just their taste in bouncy seats. It was Helen's first birthday too. Moved to tears, I grabbed my cell phone. Nancy, Helen's mom, answered after the first ring. Without knowing exactly the right words, I introduced myself. She recognized my name and Allie's. Members of Friends of Allie had sent her uplifting and kind messages in their guestbook. The first thing I told her was that it was Allie's birthday too. Our girls were six hours apart. Both girls were diagnosed in May. What makes her story even more difficult was that yesterday was also Helen's twin brother, Robert's, birthday. Robert is in perfect health. A bittersweet day for Nancy and Darrell. We spoke through our tears for over thirty minutes. I hope to speak to her again.
Andrew picked me up only two and a half hours later to head to the hospital. It was Allie and Helen's birthday, but that's not it. Dr. Goldman was celebrating his birthday as well. Allie's "birthday buddy" most definitely needed some cake. Vanessa Erling, a friend of Dana's who makes decadent chocolate cakes, was just the person to contact. Vanessa made two chocolate mousse cakes with chocolate covered strawberries--one for the clinic and one for 12 South. The night before, I had stayed up late to write letters to every nurse Allie loved and adored as well her physical therapist, child life therapist, and three doctors. With each individual letter, I printed off a picture of Allie. If I had a picture of them with Allie, that is what I used. If not, I chose some of my favorite happy Allie pictures. I wanted each and every one of them to know the impact they had made on our life. I wanted them to know how they made us better people.
Dr. Goldman was pleasantly surprised to see us. He said, "I was thinking of my girl this morning!" He remembered her birthday. Dr. Lenarsky came out to greet us too. "You know, " he says, "my birthday is July 27th." We hugged and they invited us to their breakroom to enjoy a slice with them. We sat and talked for about thirty minutes. Dr. Lenarsky asked us questions about what we were doing, about my involvement with LLS, and about all the other kids he knows we keep us with. We told him about the research grant being named after Allie and Sam. The great part about the grant is that we get to choose from several different researchers. We wouldn't have a clue which to pick as I told Dr. Lenarsky. So, we are asking them to choose. "I'd be honored, " he said. How satisfying for our two families to know that Dr. Lenarsky, Dr. Goldman, and Dr. Weinthal will be the ones choosing the right grant.
We left the clinic with a glance to "Big Sophie" in the playroom then heading to visit our nurses on 12. Kochumol was the first to hug me. We had a wonderful visit. We passed out their letters. Andrew joked that it was like Allie trading cards. Each picture of Allie was different. They were all comparing, "Well, which one did you get?" "Oh, I'm keeping mine!" "I love it!" It was the best moment.
At 4pm, the Leukemia and Lymphoma Society hosted a balloon send off to Allie. Our family met us there. Along with those LLS employees in the office, we walked to the roof of the parking lot. Angie, the campaign director of Light the Night, spoke about the balloon send off. She read a poem about Allie written by a sixth grade student Caitlin Woolum. A moment of silence and then it was time to release the first balloon. I let go of mine first, and then all thirty went into the air. In tears, I stood and watched white balloons with red strings float to heaven. Allie loved balloons. She would have really liked that. I can just envision her kicking her legs like crazy with her mouth wide open. A squeal might have even escaped from her lips.
Time for her birthday party. Food, food, food. We had a feast. My friends Angie and Stacey from LLS were there. Dennis and Dana completed our party. We ate, drank, and laughed. Josh, Joey, and Hannah were perfectly behaved. We celebrated the FANTASTIC news that Sam's blood is showing ONE HUNDRED PERCENT Ethan!!! This is a major step in the transplant world. The best birthday present Allie could have possibly given us. At 8:10 pm, we lifted our glasses to Allie. "To Allie!!" Not sadness, but joy. Joy for her life. Joy for the change that she made. Joy for the impact she had on each and every one of us. I am so proud that I am her mother. What a year. What a child.
Speaking of Allie's impact, let me tell you something awesome that happened. Bill read a letter out loud from a woman named Moni in Arizona. Moni organized a birthday surprise with people from the msn board. People sent money to Moni, and she cut a check to us for Heroes for Children. This is the first donation that Heroes for Children, our new non-profit, has received. $2,500!! We were thrilled and overjoyed. Awed by the love of strangers. Thank you, Moni, and thank you to everyone who donated. I promise that money will be put to good use--families with cancer kids will thank you too.
Today, we planted a red oak in our backyard. If you remember, Annie and Jack Ormond went in with Dana and Dennis Eisenberg to give us a gift certificate to Calloway's Nursery. What a thoughtful gift. When he went to San Antonio in November, Andrew had found a wooden giraffe wood chime. It has been hanging on a hook in our breakfast nook since then. Now, it is making music for the neighborhood in Allie's memory.
And oh, what a memory it is.
Happy Birthday my sweet angel. Swing on a giraffe, kiss your grandpa, and watch over us all. We love you!! Mama and Daddy
With lots of love, Jenny and Andrew
Tuesday, Dec. 14th--
11:00pm--Heroes for Children. Our new non-profit organization that has merged with Taylor's Angels (www.taylorsangels.org). Larissa and I have been hard at work. We've met with our consultants from Inter-phil (International Philanthropy) Karla and Suzanne, gotten a DBA, changed the name for the post office, etc. We haven't completely agreed on a logo or gotten our website up and running, but the organization is moving in full force now. I'm so thrilled to be apart of it! I like the name more and more each day. Our daughters represent heroes for other children. The people who donate for the families are heroes. Hopefully, we can get major heroes to also represent us. It has major potential.
Our 5K is set for May 7th in Frisco. We would like to have a 5K out in Ft. Worth as well. We have a golf tournament, training for the Disney Marathon, the cookbook and calendars as well. Money goes to families with children of cancer. Bills pile up, gas expenses get high, and cars need to be paid. Heroes for Children is strictly for benefiting families. It won't be for research--we rely on and trust organizations like the Leukemia and Lymphoma Society to do that. What they are doing at LLS is vital. I do believe that in my lifetime, a cure will be found. Until then, we need to search for the cure and help the families currently struggling.
In other news....
If I didn't know better, I would think my dog is a person. She's sitting with her legs crossed over one another on the loveseat. She gets nervous when I stare at her, so now her eyebrows are shifting back and forth. Brandy continues to be my comfort here at the house. She follows me non-stop. Just as attention wanting as ever, she is my constant companion. At night, she gets frustrated with us if we stay up too late or talk in the bed before falling asleep. All she wants to do is curl up in between us and relax. How dare us bother her! Dogs have their funny little quirks about them. Every dog is different, just like humans. For example--do you know my dog will not enter the house on the first attempt? Oh yeah, its a fun little game we have to play. We open the door; she stares at us. We close the door. Jingle of the collar moving closer to the door. Open again. Usually, a second blank stares ensues. Close the door. Jingle, jingle. Open again and in she comes. If in a hurry, we open the door with the treat jar in our hand. Shake it and get instant results!
Gotta love a dog. I know Andrew and I love Brandy. We used to be on the brink of obsessive about her. I think I am falling back into that a little. I worry about her all the time now. I'm back to being a doggy mommy, and I take my role very seriously.
Thank you to everyone who has sent kind words in the guestbook this week. Yes, it is a difficult week. Yesterday marked three full months without our giraffe lover. I worked at the society calling schools all day for Pennies for Patients. Last night, we attended a Light the Night Appreciation Party. Dana and I presented our Vegas speech. Surprisingly, I kept my composure. The hardest part was if I looked at Angela. If I made eye contact with Angela while speaking, I choked. She loved Allie like Allie was her daughter. On some days (pre-leukemia), she saw Allie just as much as I did, if not more.
Saturday, I was privileged to have lunch with my friend Staci Cook, Julianna's mom (www.caringbridge.org/tx/julianna). A lunch at On the Border turned into an all day event. If you haven't been able to tell yet, I'm a talker. So is Staci. We talked for almost four hours! We arrived at 11:30 and didn't leave until past three! Thanks, Staci, can't wait to do it again. Thank you Allie and Julianna for bringing us together. Yet another great thing Allie did for my life.
Not a second has gone by in the three months since that we haven't thought about her. I think about the fun times. Oh, we had some serious amounts of fun with that girl. I never turned down an opportunity to play. Before she was sick, I was not happy if I had to get up at 3am. After, I would gladly sit up in bed and play with her at all hours. I can't tell you how many 4am peek-a-boo games I played. I can tell you that I loved every one of them.
Friday is Allie's first birthday. Yes, of course, it is sad. However, it is happy too. It is a celebration. Look at the magnificent life my daughter led and you will understand. Our plans have us moving all day. Blood donation is first at Medical City of Dallas at 8:30am. We plan on a visit to the docs and 12 South in the afternoon. LLS has been sweet enough to put together a balloon release from the roof of the parking lot to any employee and our friends and family that want to attend. After that--a party at our house. We'll drink, laugh, talk, and remember. At 8:10pm, we'll have a moment for Allie and maybe a toast. 8:10pm last year--gosh, what a happy time! 8:10pm this year, I want to remember that happiness.
I will end this post now on that happy note. Thanks, Dana and Dennis for dinner tonight. Andrew, your master trainset builder, and I had a nice time. Sam told me that I can come over anytime, so I'll have to remember that! Of course, he may need Andrew's services again, so just let us know. :)
All my love to my giraffe loving, raspberry blowing, chubby, sweet, blue-eyed angel "Allie cat". Mama and Daddy love you pookie bear!
Wednesday, Dec. 8th--
Give the Gift of Life Blood Drive at Medical City Dallas (where Allie received her treatment) Carter Blood Care Friday, Dec. 17th 7am-3pm Basement Classrooms 3 & 4 Contact Susan McBee at 972-566-7032 to set up an appointment time
11:15pm--Walking off the elevators tonight on 12 South, this was the first sign we saw. No affiliation to us whatsoever, but how neat is it that the blood drive is planned for Allie's birthday? If you are in the area and able to donate, please consider doing so. It would truly be a great tribute to my giraffe loving girl.
Andrew and I had gone up for a visit and got a chance to see two of my favorite people in the world, Lourdes and Beth. I was sad that I missed some of the other phenomenal ladies on the floor such as Jasvir, Kochumol, Cindy, Marlene, Katie, Ramona, Michelle, Karen, Vangie or Marsha (well, they are all phenomenal truly), but so happy to see Beth and Lourdes. Lourdes is one of the most loving people I have ever met in my life. I love to hug her because she even smells as sweet as she is. I don't know what her perfume is, but it is distinct to me. I have really missed them. I can't tell you how many nights I spent visiting with Beth. I don't just think of her as Allie's nurse, but my friend. I was so glad that Andrew agreed to go with me tonight up there.
People wonder if it is too difficult for me to go to 12 South for visits. I feel the closest to Allie there. I'm not sad at all when I go. I'm happy. My fondest memories happened right there on 12 South. No, I don't want to go into room 1203 any time soon, but being on the floor doesn't disturb me. It brings me peace and comfort. It reminds me of the happy times we shared with that kid. As strange as it might sound to some, our time on 12 South was some of the best in my life. I was so blessed to be sent there and for Allie to have gotten the absolute best nurses possible.
Beth said it isn't the same on the floor without Allie, Fieldon, and Sam. Currently, they don't have any children, just adults. That's a good thing, but they do miss having kids, especially our group. There are pictures of the kids in the nurse's station. Not only did they care for our children; they loved our children and still do. Right after we arrived, we jumped right in to updates on Sam and Fieldon. They wanted to know exactly how the boys were doing. We laughed together at the image of Sam ruling the Eisenberg household. When I told them of Sam jumping up and down, flapping his arms like a chicken with excitement and yelling, "EMMADAAAYY!!!!" they laughed as if they could see him doing it in front of them (whenever Sam is excited he does that funny little hop and arm flap routine--its really a sight to see!).
Some people have asked me about how Jordan Morgan, the 11 yr old with AML, is doing. Jordan was living on 12 South with us after his bone marrow transplant in June from his younger brother Justin. I have not been able to get in touch with the. Amy and Matt were at Allie's funeral, but Jordan couldn't attend because of the germs. I left a message with the nurse at the clinic to pass on to them. They moved and I don't have their new number. But Andrew and I did sign up to give a gift to Jordan and Justin for Christmas since the nurses on 12 are sponsoring his family this year. I hope to get a message to them that way. Amy and Jordan, if you read this, please email me. We miss you guys!
Going to 12 South lifted my spirits. I was in a deep funk yesterday. It was ugly. But ugly deep funks are going to happen. They are apart of my life now and apart of my grieving. I have to figure out how to deal with them and continue to move forward. I have to make sure that I continue to celebrate my girl and to live as best as I can. I'm trying, I really am. I am choosing not to write about what happened yesterday and to allow myself to look forward to tomorrow, no matter what the day brings.
Monday night, I was paid a huge compliment. After finishing tutoring three high school girls, one of them asked me to stay back a minute. Leslie Hansen, a former student of mine for 6-8 grade, asked me if she could ask me a few questions. You see, her PAL class (Peer Assistance and Leadership) got the assignment to write a paper on a leader. While other students in the class were choosing leaders such as the president, Oprah, or even Hitler (it could be about a leader that wasn't like so some of the boys decided to go that route), Leslie had chosen to write the paper on me. She has a three or four page paper to write as well as a presentation tomorrow about me. I loaned her Allie's memorial video to show if her class has time to watch it. I can't tell you what a compliment this is to me. Being a teacher, your goal is to make a difference in the life of a student. Hearing that I did so means the world. Thank you, Leslie. You're quite the leader yourself.
In final news, the cookbooks and calendars are continuing to sell well. Proceeds are going to the merging organization between us and Taylor's Angels. VERY IMPORTANT--If you are interested in receiving information about the new organization, including emails and newsletters, please email Sharon Lawson at sharontxladi@yahoo.com. Sharon, aka my mom, is coordinating putting together a database for supporters. Please email her by this weekend to make sure you don't miss out on some exciting and important information.
To end for the night, I want to wish you all a safe and healthy holiday. Doesn't matter what religion you are, the message is the same. Cherish your loved ones a little more this holiday. That is what is really important right now. It isn't about the gifts you buy or the wrapping paper you use. It is the love that is behind those gifts that really matter. Remember those that you have loved and lost. Tomorrow, I will be thinking of the life of my father, Jerry Lee Lawson. December 9th is his birthday. He died four and a half years ago after a long battle with tongue, neck, and lung cancer. How lucky is Allie that she is up there with her grandpa on his birthday. I know they will be smiling down on us tomorrow.
Go and hug and loved one. With lots of love, Jenny, Andrew, and the attention wanting sockhound Brandy
Sunday, Dec. 5th--
We invite you all to come and support Parker. For more information, please check out www.parkerhays.com. He's an awesome kid that needs a lot of support. In his nine months of treatment, he has yet to reach a remission status. He needs and deserves our love and support!
I hope to be able to attend Parker's prayer meeting. My only problem is that I had scheduled myself to tutor a student that night. I have been tutoring four sweet girls in tenth grade on Monday nights. One couldn't make it tomorrow night, so she emailed me a few days ago to see if we could do a special time. We set it up for Tuesday night. I am hoping that she is available to tutor earlier Tuesday night so that I can then rush over to Mesquite. If not, I will be with them in spirit. I truly do care for the Hays family. Tiffany and I have been friends. She is a special lady.
Things at the Scott house are going alright. Yesterday, I was down. Real down. I have been very sad about baby Hayley in Georgia www.caringbridge.org/ga/hayley. I had a huge urge to call the family, so I did. Dayna and I spoke honestly and lovingly about our two gorgeous girls. I hate that Dayna, Hayley's mom, is going through what she is. I hate this cancer for hurting our girls. Please pray for Hayley's comfort and for peace for Dayna and Alan.
Continuing along the lines of prayer request, please pray for our friend Kayla Vancleve. Kayla's Lymphoma has relapsed. We don't know yet whether she will do in our outpatient chemo, but we know she will be starting soon. Please keep Kayla and her family in your thoughts. You can visit her site at www.caringbridge.org/tx/kaylavancleve.
Andrew and I decided a few weeks ago that we weren't "doing Christmas." No tree, no presents. Nothing. We usually don't give gifts to each other anyway. We thought it would be too painful. Yesterday, we changed our minds. We've been asking people to help us celebrate Allie's memory and life. By ignoring Christmas all together, aren't we going against what we are asking of others? No, instead, we are celebrating Allie. We chose to do so today by decorating our tree. Andrew brought down the stuff from the attic. I turned around to see him crying in our office. He had found Allie's stocking. It wasn't as hurtful to see it as it was to figure out what to do with it. We opted to not put it out. But, we did put up all her ornaments that we had gotten last year. The best one is a hand painted ornament that says "Allie 2003" on one side. What struck us was what is written on the other side. "Angel baby," it reads, with wings around the words. That is exactly what Allie is--forever our angel baby. I t is beautiful. I called Mary Albritton, our beloved family friend who bought the ornament, to tell her all about it.
So, our tree is up, our house is decorated (on the inside--we've never been good about outside lights), and invitations are sent for Allie's Celebration on Dec. 17th. Instead of ignoring the holidays, we are going to face them head on. We will not let this bring us down (though we will undoubtably have our down moments), but we will continue to celebrate the life our girl.
Sales of the Faces of Childhood Cancer Calendar have been moving along (www.cafepress.com/raiseawareness). Please purchase yours today! Cafepress is saying they will have a Christmas deliver if you order soon enough! Plus, I am proud to announce that the Cooking for a Cure cookbook is ready for order! Check out www.cookingforacure.com, and you will see the most handsome cover man I know! One look at his eyes and you know where Allie got those baby blues!
That's it for now. It's late and I am a "special friend" at Josh's preschool in the morning. Proud to be a special friend of that kid--just love him!
Don't forget to order your cookbook and calendars! All our love, Jenny, Andrew and Brandy
Thurs. Dec. 2nd--
9:30pm--What's the best thing that can happen to you while sitting at your desk while working? For me, it was hearing "Surprise!" and turning around yesterday to see my favorite little man smiling at me! What a pleasant surprise. Sam is doing fabulously well. He makes me smile each and every time I am around him. He is a joy, as is Ethan. I'm so proud to be called their friends.
Its funny. When you start seriously dating, people ask, "So, when are you getting married?" You marry. Soon, people start asking, "So, when are you having a baby?" Grandparents are the best at this question. The first baby is born. Sometimes, no more than a few weeks to a month later, the first person will ask, "When do you think you will have another baby?" My friends tell me that after baby number two comes, the question changes to "So, is this it or will you have any more children?" Well, I have found there is another question to had to this list. After the death of a child, the question changes to, "so, do you think you will ever have another child anytime?" Yes, sometime. I think I answer this question a few times a day. It doesn't bother me, really. I do want another child someday. Being Allie's mother was one of the most fulfilling times of my life. Her life and legacy have made me a better person. I know that it will one day make me a better mother too.
To honor that life and legacy, I continue on. I am working on writing a book. I have still yet to find an agent or publisher, but I honestly haven't been actively trying as best I should be. I've done a layout of the entire book and written several chapters. While showing it to Amie, I told her that I didn't know if it was any good. She asked, "does it feel good to you?" Yes, it does. "Then go with that and you will make it work." Good advice, Amie, thanks.
Creating a non-profit organization is a cumbersome and time consuming project. Instead of creating a separate foundation, we have decided to merge with Taylor's Angels www.taylorsangels.org, an existing non-profit organization here in the Dallas area. Cole's Cure is being created in California by my friends Keith and Brandy Regan for the same purpose. The mission is basically to provide financial assistance to families. The problem is that we can't do this without funds. We have to start smaller first to build our name, which we are working on trade marking. We hope it will be success.
I've been asked by a few people if there is anything they can do to celebrate Allie's upcoming first birthday. We are having a little party at our house with some of our closest friends to celebrate her life. It was a beautiful life, one that made my life worth living. Even in my sadness, and believe me, I am deeply sad, I will celebrate my daughter. On Dec. 17th, you can help me celebrate the life that was Allison Leigh Scott. Do something fun with your family and friends. Tell the people you love how much they mean to you. Hug more people. We should be doing that everyday. Allie is reminding us of that. In the holiday season, people want more to do charitable acts. Many of you have already done so this year in honor of Allie. If you are interested in making a donation, you can do so through Taylor's Angels to help us in creating the npo. Help isn't needed for our family any longer, but it is for the many families out there still battling childhood cancer. We've had such a positive response so far to the Laptops for Love campaign of donating new and used laptops (there is even a student group at a high school raising money to buy a laptop for donation!) Hopefully, we will have laptops soon for donation to worthy and needy families in the hospital.
For great gift giving ideas, please check out the Faces of Childhood Cancer website www.cafepress.com/raiseawareness. You may notice Mr. November and Miss December! A lady named Moni in Arizona worked hard to make this a professional, beautiful tribute to some really great kids. Proceeds are going to Taylor's Angels, which will soon be doing business as .....well, it would take away the fun if I didn't keep you a little in suspense. The other project that a group of people around the country have been toiling hard over is called Cooking for a Cure, www.cookingforacure.com. Recipes from all over for various styles of food. I wrote an introduction to the cookbook, though don't think I entered any recipes. A chef I most certainly am not. But proud of the project and to be affiliated? Oh yeah, I am.
Other than the volunteer opportunity below, I think I've written about everything I wanted to cover tonight. I'm ready for bed.
Have a good night. Hope you will celebrate life tomorrow. I know I will--I will continue living. That in itself is a bit of a celebration. Love, Jenny
Wed. Dec. 1st--
Here's an e-mail I received from Catherine Withers, the volunteer coordinator at LLS. Very important volunteer opportunity for Dallas area folk--
Not much else is going on in our world right now. We're a bit tired, so I think we're going to just veg out on the couch and relax. I'll write tomorrow.
Jenny Monday, Nov. 29th--
11:45am--Our vacation is coming to an end. We're at the airport, waiting to board the plane. Utah was great. More importantly, the time spent with Amie, Michael, and Isabella was great. We had a busy week full of activities that entertained us all. Most was centered around food, and boy did we ever eat well.
Tuesday, Frances and I flew to Salt Lake City. The weather in Dallas was horrible. We stayed on the runway for two hours, watching the storm worsen then finally shift to wear we could take off. That night, we simply visited at the house and watched a movie. Andrew and Jim joined us on Thanksgiving Day.
Being the non-chef of the family, my role for Thanksgiving was in other areas. I was the babysitter for the morning. Isabella and I walked--well, she rode her tricycle--to the park. I pushed her on the swings for a really long time, with her giggling and laughing the whole time. We had such a good time that we lost track of the time. Michael had to come pick us up as it was time to go get Andrew and Jim from the airport. After dinner, we played Cranium along with Mike's brother John and watched the movie Elf. We went hiking and exploring on Friday afternoon to a place called Bridal Veil. Living in a place like Plano, I don't see mountains very often. I joke that our biggest hill is the speed bump in the parking lot. Seeing us surrounded by mountains in Provo was quite a sight. Bridal veil has a waterfall that you can hike close to. What I learned about this area is that it was the site where the end of one of my favorite childhood movies, Savannah Smiles, was filmed. I was so excited! It made my day. Amie had just recently seen Savannah Smiles with Izzy for the first time. I've seen it well over fifty times or more. I think I could recite the vast majority of that movie. That night, we took the train to Salt Lake City, saw the lights around Temple Square and ate some of the best Japanese food at a restaurant called Mikato. It was my favorite day of the trip.
I hold Amie (Andrew's sister) and Michael in the highest respect. Every time I am around them, I enjoy our visit. They parent Isabella, our beautiful almost three year old niece, just the way we would parent Allie. In fact, we had decided before Allison was born that if anything had ever happened to us, she would have gone to Amie and Michael. Amie is the kind of mom I aspire to be one day. Patience is essential as a parent, and they are an example of patience to me. Never did I see them get frustrated with Izzy, even during a "two year old moment." Instead, they calmly handled her in a loving manner.
Isabella is an awesome kid. She is fun, creative, and spunky. Her verbal skills outdo most four year olds. She speaks with such clarity. We spent the week carting her to all the activities we wanted to do. She went bowling, to the movies, sledding in the canyon, hiking to the waterfall. At the house, we played in her "kitchen," watched Cat in the Hat (possibly one of the worst movies I've ever seen), and chased each other around the room. My favorite times were when she would crawl into my lap and let me snuggle her a little.
Holding Isabella and loving on her made my heart remember being a mom. I miss being a mom. When I say this, people usually remind me that I am always Allie's mommy. I know. I know I will always be the mother of that angel. What I mean when I say this is that I miss BEING a mom. I miss the daily aspects of motherhood, even those that aren't as fun. I miss getting up with her in the middle of the night. I miss changing diapers, making bottles, giving a bath. I miss being needed by the baby. When she was alive, Allie needed me each day. Now, she doesn't need me like that anymore. That's hard.
Thanksgiving day itself wasn't difficult. I didn't think it would. I don't have memories of her at Thanksgiving. However, I did have several breakdowns during the week. Each time I did, Amie was there by my side. She comforted me and listened. She respected my feelings, and tried as best as she could to empathize. Wednesday morning, she found me sitting on Izzy's bed after my shower crying my eyes out. We were supposed to be dressing and heading out the door (for something but I can't remember now). No rush. Amie simply sat down on the bed next to me, put her arm around me, and listened. Thank you, Amie. I'm so lucky to have a sister like you. No need to call you my sister in law anymore, you're my sister and I love you very much.
The worst meltdown happened at church on Sunday morning. I didn't think going to the church would bother me. I've been once to my home church in Plano. Not a problem. What I didn't think about was that this is a Mormon church. Absolutely no offense to the Mormon church or people here at all. What I mean by this is that the Mormons have a lot of kids. And they have them in the service with them. So, as we arrived, all I could see was babies. I'm talking babies on every single row of the church. No exaggeration whatsoever. Staying for the entire service was important to me because Michael, who is the Mission Ward Leader, was the speaker. Service--which I learned is called Sacrament--began. As did the crying kids. Babies were all crying. I couldn't hear anything the speaker was saying, just hearing crying babies. Have you ever seen Bruce Almighty? You know the part where all he could hear was the prayers of thousands all ringing in his hears? Well, I was Bruce. Except all I could hear was babies crying. Kids were yelling. My head was spinning. Anxiety. Suddenly, the crying I heard wasn't the baby in the pew in front of me. It transformed to Allie. I could distinctly hear her screaming. Not crying-but screaming. Screaming the way she did the day she died. My breathing got harder, and the tears came. I excused myself from the room. Amie and Andrew followed quickly after me, knowing what was happening. We could leave, they told me. No, I wanted to hear Michael talk. It was important to me. As much as Michael has done for us (such as the two videos he compiled), I felt that need to support him. I composed myself, and attempted to sit back down in the church. No more than five minutes later, I was out of the room again. The crying had continued. Frances and Jim followed out with our coats. We could go at anytime. Just then, Amie was singing with the choir. I stayed to watch. Then it was Michael's turn to speak. Michael is quite a speaker. He addressed the congregation in a loving manner, but was direct in his words. The thing he said that stuck with me the most was the concept of eternal families. While speaking, he looked my direction and said that families can be together again in Heaven. God, I hope he's right. Several mothers had pulled their children out of the main room and into the front entrance with us. A young couple sat with their baby son. Bald and beautiful, the baby boy looked like Allie did this summer before her transplant. I thought he had to be around six or seven months. I asked. "He's sixth months," said his mother, "Do you want to hold him?" she asked me. Yes, yes I did. But instead, I began to cry harder, "I can't, I just lost my daughter and I...." unable to speak. That poor mother didn't know what to say to me. Out of respect, I think, she walked her son away. We left shortly after that. Michael was finished speaking, so we made our exit. I had wanted to meet some of Amie and Mike's friends, but I just couldn't stick around. Too many children.
Last night, as I was helping tuck Isabella into bed, Izzy was playing with my necklace. I don't know who sent me the necklace, but it is silver charm with a black and white picture of Allie's smiling face (the pic we used of her for LTN). The day after Allie died, we opened a package containing his necklace. I have worn it everyday since. It came from a company called www.planetjill.com, but I don't know who it was that was kind and considerate enough to have it made for me. Whoever it was, I am grateful to that person. Anyways, Izzy was flipping my necklace around to where you couldn't see Allie's face. She would then go, "Hey, where'd Allie go?" in a little singsong voice. One time I asked her, "Isabella, where DID Allie go?" She thought for a moment, pointed to a white box and said, "She's in a white box, like that one." She was right. Allie's casket was an all white box. The concept of where our bodies and spirits go after death is confusing enough to adults, let alone two year olds. Amie and I tried to explain to Isabella that though her body was in the "white box" her spirit was in Heaven with our Heavenly Father. With a look of confusion, Isabella shook us off and went back to playing hide-and-go-seek with Allie's picture on my necklace.
Amie and Michael say that Isabella will play with Allie. Without mention of the baby to prompt her, Isabella will announce to her parents that she is playing with Allie. We don't know if she actually sees Allie or if it is just her imagination. At the park, she pushed an empty baby swing. When asked what she was doing, she responded that she was pushing Allie. Amie says that she said in a tone like, "duh, mom, what does it look like I'm doing?" She sings all through their house. After the funeral, I found her standing in the middle of my hallway, which we call Allie's Alley (all the black and white Katy Tartakoff pictures are hanging there), just singing away. She told me she was singing Allie a lullaby.
With it being Thanksgiving weekend, I've had a lot of time to think about what I am thankful for. Even after all the stuff (that's putting it gently, it was crap) we went through this year, I am still thankful. So, to end this really long post, I think I will remind myself again of my list:
*I'm thankful for Andrew. That man is my rock. I'm thankful for our love and for our friendship. He truly is my best friend. I couldn't think of a better person to spend my life with.
*I'm thankful that I was Allie's mother. Nine months with Allie is better than none. I am so grateful that she chose me to be her mother.
*Speaking of mothers, I'm thankful for my mom. I don't think I tell her enough how much she is appreciated. Its hard to express it at times to her. As I've said before, she is my only surviving parent. I don't know what I would do without her in my life.
*I'm thankful for my brother Jeremy. I've missed him living in Houston. I don't get to see him enough anymore.
*I am thankful for Andrew's parents-Frances, Jim, Drew, and Jane. They have welcomed me and loved me as part of their family. They were there for us when we needed them.
*For Isabella, Amie, and Michael. As I described above, I love and respect them so much. How lucky I feel to be able to say they are my family!
*For Dr. Lenarsky, Dr. Weinthal, and Dr. Goldman--I am very thankful they were our doctors during Allie's treatment. Those men gave her their utmost care and love. They showed us each and every time they walked in her room that they cared for her well being. I will never believe that they just couldn't save her. I will always believe they did everything in their power.
*For the nursing staff of 12 South. I am honored to say I've met them and that they took care of my baby girl. I miss them. I miss seeing them, especially at night.
*For my good friends Angela and Debbie. Two very different friendships, two different friends, but I am thankful for both. I know we will be friends for a long time.
*For the Eisenbergs and the Ormonds. I am thankful that I got to meet them, even under the circumstances. Thankful that we were there for each other during our hardest times, and so very grateful for our friendships with them.
*I am thankful for the people at the Leukemia and Lymphoma Society and for the work they are doing to find a cure for this disease.
*I'm thankful for the many people that have supported us during the hardest time in our life. For those friends and strangers that cared enough about our family to do things like walk at a Light the Night walk, donate time or money, send cards or gifts, or even simply signing our guestbook.
When looking at this list, I realize that I am not thankful for anything material. It's the people that matter, not the stuff. The only non-human thing I am thankful for is Brandy (though don't tell her she isn't human, it would crush her!) The people in my life make me a better person. It just goes to show that it isn't about the stuff, but the people.
To all the people in my life---I love you. To my darling Andrew and Allie--I love you more. Jenny
Monday, Nov. 22nd--
11:15pm--Go, go, go. I am constantly on the go. It may be my way of dealing with my situation. If I'm too busy to stop and think, I don't get sad. I'm not necessarily always happy, and I certainly never stop thinking of Allie, but I am not wallowing in my sadness of our lost. When I do get sad, I get in a funk that is hard to get out of. I try instead to focus on the happy moments of Allie's life, on her beauty and smile, and on my goal of awareness and finding a cure for this disease. I allow myself to cry, but usually only in private (though my friend Trisha at LLS was kind enough to loan me her shoulder this afternoon--thank you so much, Trisha, it really helped and meant a lot to me!).
Frances and I leave in the morning for our visit with Amie, Michael, and Isabella in Utah. We are so excited! Jim and Andrew are meeting us there on Thursday. Amie has the week planned, which none of us are surprised about. We will be sledding, going to the library, taking Izzy to the movies to see Polar Express, and basically doing anything Isabella tells us we will be doing. Spending time with Amie, Mike, and Izzy is what I am most looking forward to doing. Doesn't matter what we have planned, I'm just looking forward to their company.
Enough about us....I really need to focus on some kids that I care about.
First, for the ones doing well... Sam Eisenberg--My best boyfriend! He looks good, feels good, and is complete control of the Eisenberg house! I spoke with him tonight and he told me that he misses me. Ethan told me to come over next week, so I will definitely be making a stop over with them. I'm so pleased that Sam continues to do so well. I love him and Ethan as though they were my own children. I get like that with my friends kids--I can't even begin to express all my love for Josh, Joey, Hannah, Ben, Maggie, and Abby. I may not be those children's mother, but I love them like family and am so proud of who they are.
Fieldon Ormond--Fieldon marked his 100 days post transplant on Thurs! This is a huge deal in the transplant world. If you remember from Allie's treatment, Day Zero is transplant day. They then begin to count up until Day 100. This marks a time when acute cases of GVHD should have happened (though they may still afterwards) and that the body is really excepting the graft well. Fieldon is completely off IV medications, and simply has a feeding pump for his belly port for feedings. He has a head full of fuzzy hair. Andrew and I had the great privilege of being dinner guests at Annie and Jack's last night. We had easy, fun conversation while enjoying Emmaday's sweet smile all through dinner (Fieldon went to bed shortly after we arrived). I can't tell you how good it was to be around them. They are two of the neatest people I know. To think that we didn't know them before July boggles my mind. I feel as if we have known them so much longer than that.
Now for the harder ones. These are children I follow on the internet and correspond with the moms of some....
Emerald Maes--Emerald is a ten year old with a spinal cord tumor. In Oct., her tumor showed shrinkage. In the past week or so, Emerald has been experiencing some pain, discomfort, vision problems, and inability to use her arm. This could, fearfully, be due to some tumor growth. Please pray for Emerald! She is having a MRI tomorrow and we want nothing but good results for her this Thanksgiving. We are praying it is a concussion, not the other c word (I won't dignify it enough to spell that word out! Terry Josephson, a dad in Canada to Julianna Banana says he won't respect those words by capitalizing words such as the c word or leukemia. It certainly didn't respect our families, as he says, so we won't respect it! Good thinking, Terry) By the way, Emerald's mom, Kimberly, makes excellent soaps that help fund Emerald's treatment and give donations to Alex's Lemonade Stand (for cancer research). Please visit www.edgeofthetub.com.
Julianna Cook--My sweet hero fighting ALL here in Plano, TX. Julianna was admitted today to the hospital for a 102.3 (under arm) fever this afternoon. For those that don't know or understand, leukemia kids don't just take tylenol and see what happens. As soon as a fever is detected over or about 101.5, the parents call the doctor and head straight for the hospital. I will call Staci, Julianna's mom, tomorrow to check on her, but please keep her in your thoughts and prayers. I hope everything goes smoothly and they are back home for Thanksgiving with Regan and Jamison.
Parker Hays--Over the past few weeks, I have gotten to know Tiffany, Parker's mom, more and more. Tiffany is a woman with a heart of gold that does so much for her family. Unfortunately, Tiffany has to spend Thanksgiving with Parker hospitalized at M.D. Anderson in Houston, far away from her family and friends. Parker is receiving chemo and radiation this week. They leave tomorrow. Poor guy has been having a real tough time for the past couple weeks. I hate it for him and his family.
Taylor Krueger--While I have yet to introduce myself to Taylor's family, I have been following Taylor's story through her website. Taylor is a little girl in Iowa with ALL. This September, she relapsed. For relapse ALL cases, this means transplant. Transplant is essential. The problem here is that Taylor has a rare gene type and has yet to find a bone marrow match. Everyone in the cancer world is BEGGING--please, please, please, go register to be a bone marrow donor!!! If Ethan Eisenberg can donate his bone marrow for his brother to live at the age of three and a half, surely we can be willing to do it too! I say we because I intend to get on the list too. We have to register! This could potentially save a beautiful life like Taylor's. They have been conducting a worldwide search for a match to no avail. This could save her life! She deserves this chance. She has fought so hard! Please visit www.marrow.org to find out how you can be a possibly match for this beautiful child. If you ever considered doing it, NOW IS THE TIME!!
Kyle Sampson--Kyle is the same age of most of my students. At his age, he should be focusing on his xbox skills, not his ability to breath. Lisa, Kyle's mom, and I have had the distinct honor (its mine I guarantee you) to become email buddies. He is fighting Stage IV Undifferentiated Scarcoma (guess I should put that lower case, huh Terry?) and has stopped responding to chemo. Tomorrow, he is being transported by ambulance to the hospital for a blood transfusion. He is on heavy amounts of medication, and his future is very uncertain. I'm scared for Kyle and for my new friend Lisa. Lisa, if you are reading tonight, please know that you are not far from my thoughts. I care about you and am always here for you.
John Rittner--This handsome little man just celebrated his first birthday in the hospital post transplant (AML, transplant from his hero and older brother Mikey). He is engrafting perfectly, but has been in PICU for over a week due to a liver problem. He will most likely be in the PICU through the end of this week.
My heart is aching to even write about the last gorgeous child. I think of her and see a version of Allie, just a year older and three or four months later...
Hayley Thompson--How can I describe how much my heart has ached for this little girl? I think I am finally grasping a little of what people thought about with our family. I can't sleep at night without checking on Hayley. Unfortunately, Hayley has not been doing well. She went into her transplant as a relapse AML case, just as Allie did. Fourteen days post transplant, the blood results returned with 43% blasts. Her parents, Dayna and Alan, took Hayley home. Today, her blast count is miracously down. I hope it is that miracle we are all hoping for! Hospice paperwork is all settled, and Hayley's time on earth is undetermined. Her spirit is in perfect shape, having fun at home chasing her cats, according to Dayna. I want so desperately for this little girl to be chasing cats for many more years. I want her to chase her brother who is chasing cats too (she is currently an only child, so you get where I'm going with this). Dayna and I have been emailing off and on. I want her to have someone that she knows understands her feelings and fears. Dayna, rest well tonight and enjoy your day tomorrow with the cat chaser! So many people around the world adore Hayley and want nothing but the best for your family. Know that I am included in those many thousands.
Andrew says that sometimes it is harder for him to hear about the other children hurting out there. I agree. When I think of Allie, sadness is not the first thing that comes to my mind. I don't think I can think of Allie without at least a small smile (and I think of her constantly, so that is why I am usually smiling!). I hate to hear of other children struggling. It then reminds me of the hard times with Allie. More so than that, it reminds me that cancer is still out there and that we need to find this cure! It makes me so upset to see cancer invade so many innocent and beautiful bodies (absolute terrorists, just as I heard described at the LLS convention).
Please keep all these children in your thoughts. If you are a person of prayer, let me encourage you to pray hard. We need to be in their corner. If you get the chance, send the families well wishes in their guestbooks. It does make a difference to families knowing that there are people out there caring about them, trust me, I know. The support and love we received from people all over is what all these children and families deserve.
As the holidays are approaching, people ask me what more can they be doing. Besides the fact that you are going out immediately and getting registered to be a bone marrow donor, you can always be giving blood. No, Allie doesn't need it anymore, but someone does. Please contact your local Carter Blood Care (north Texas area) or American Red Cross to find out about blood donations. For more information, you can also visit http://www.cuttingedg.com/donateblood/ to learn more about blood donations. Financially, there are always groups looking for donations for the holidays. St. Jude's, LLS, Alex's Lemonade Stand, Taylor's Angels, etc.
Finally, if you have a used laptop that you are looking to get rid of (if you are like my husband, you are itching to upgrade), please consider sending it to us. You can make the donation through Taylor's Angels in order for it to be tax deductible. I would like to put together a Laptops for Love campaign to get companies and families to donate laptops. These laptops would go to families in the hospital with children of cancer. I don't know what I would have done had Andrew not had the idea to buy me a laptop as my first Mother's Day present (he gave it to me the day before she was hospitalized because he wanted me off his home computer--I was spending too much time on Babycenter!). Laptops are the link for families to the outside world through email and websites such as ours or caringbridge sites. If you are interested in this program, please email me at jscott665@gmail.com for more information. Consider it a fantastic holiday gift for a family in need.
Wishing you an early Happy Thanksgiving. I will try to post in Utah, but I do not know if I will have the capability.
All our love, Jenny, Andrew, and sockhound Brandy
Wednesday, Nov. 17th---
10:35pm--Tonight, I'm laying in my bed, snuggled under my covers. This time last night? I was having a glass of Dom with some major partners of Light the Night and Regatta at the Paris Hotel in Las Vegas. Can I stick to the old saying, "what happens in Vegas, stays in Vegas?"
No, seriously, Andrew, Dana, and I were invited to Vegas (Dennis couldn't make it due to patient appointments and surgery though his presence was certainly missed) to join the Light the Night and Regatta staff for their annual conference and training. We were asked to keep it a secret as they wanted it to be a surprise to their staff members. Only a few people at the home office in New York and the North Texas Chapter knew of the trip.
We stayed at the Alladin hotel. We flew yesterday afternoon with Angie Hays and Jason Vincik from the society. Since our first event wasn't until 6, we walked the strip, went to Caesar's Palace, and went hunting for presents for Sam and Ethan. When we arrived back to dress for dinner, we were greeted with a wonderful food basket (don't ask about Weight Watchers--its impossible in Vegas!) and a personal letter from Greg Elfers from the society. I felt like a rock star or something!
A partner cocktail reception was the first thing on the agenda. With only around forty people in attendance, we had the chance to meet some of the executives of LLS and the major sponsors in a more intimate setting. We were then ushered into the Grand Ballroom for dinner and awards ceremony. The purpose of the awards ceremony is to honor the major sponsors of partners of the two events, both Regatta (sailing) and Light the Night, as well as give awards to the individual chapters across the nation that had an exemplary year. After recognizing the partners, presenting them with an award and allowing them to briefly speak, they announced that we were there. Lois Whittaker, a very nice and dedicated woman from New Jersey was also there in attendance. Lois took on the daunting task this summer of being the Allie's Angels National Team Captain while still working and taking care of her family. Her hardwork helped the team become as big as it did. Dana, and I were each given a beautiful plaque as was Lois. What I failed to mention was that as our name was announced, the entire staff stood for a standing ovation. This took me by surprise. I thought that surely most of them didn't even have a clue as to who we were. I found out today how wrong I was, but wait, I am digressing.
After the awards ceremony, Angie, Jason, Andrew, Dana, and I headed to the Paris hotel for some gambling, drinks, and a trip up the Eiffel Tower. We had a wonderful evening!
This morning was a private partner breakfast of less than twenty people. We listened to some extremely interesting information about research funding and the mission of the society. We heard the true dedication Leukemia and Lymphoma Society has towards achieving the mission which is plainly stated, "To cure leukemia, lymphoma, and myeloma." Can't be any more clear than that. The research they are finding is cutting edge. One thing that was mentioned is that these blood cancers are terrorists. You can't predict or prevent them. Unlike other cancers where something can be done to prevent it, or at least you know to be careful due to heriditary, we have no trends to look at for blood cancers. They are absolute terrorists. We were told this morning that the number one cancer that people die from is beyond a doubt lung cancer. Second to that is blood cancers, including all types of leukemia, lymphoma, and myeloma. That's scary.
Dana and I were then ask to speak to the partners. We had prepared quite a lengthy presentation that was well rehearsed. We were surprised at how the small setting unnerved us a little. My knees were shaking. To lead in to the presentation, we showed a video of Allie and Sam compiled by my brother in law, Michael. Michael did yet another fabulous job at creating a montage for people to get an idea of the wonder that is our children. Wonder was just the song he chose to use for the first half of the video, the song by Natalie Merchant. I sang that song to Allie accapella as I rocked her the night she died. For that part, he focused on the healthy Allie and Sam. My favorites were the pictures of Dana with her post-cancer big blonde hair! You could hear a gasp in the room when the picture of Sam and Dana came across the screen. Dana didn't have any hair at the time of the picture because she was finishing her breast cancer treatment. I think it was at that moment eyes shifted and landed on Dana, realizing what an incredibly strong woman she really is. The video transitioned in the AML life with a video clip of the very first WFAA story about Allie and the need for blood donations. A new song began--an acoustic version of the Foo Fighters, "Hero." Powerful, I tell you, it was simply powerful. Michael's talent is very apparent when watching something like this video. I've seen it three times today alone and it still takes me aback a little.
The partners embraced us with such warmth. None of them seemed to mind that we kept them a little over. They all very kindly thanked us for our participation. We were off to another meeting. This one was for the future of Allie's Angels, now of course being called Friends of Allie, and 12 South Angels. How to we keep our participants wanting to continue walking? It is our hope that all those that joined us this year will return with us next year and those that couldn't will consider coming along with the next walk (Canadians--be on the lookout this year--it is the first year for LTN to be in your market!).
The most exciting thing that happened during that meeting was being told about a research grant. LLS wants to choose a researcher focusing on a long term project for pediatric AML. They want to grant a fairly substantial amount to that researcher, so long as that person meets their qualifications and standards of course, in Allie and Sam's name. The grant will be named after our two favorite heroes, Allie and Sam! I couldn't be more proud. I couldn't be more thankful. It is only because of the two thousand participants across the nation that this is happening. It is because of the amount of money being brought in. We were the largest friends and family team in the history of Light the Night. Never before had they seen anything like this, especially since it almost entirely came from the internet.
Our next speaking engagement was to staff members in a much larger setting. We again played the Allie/Sam video then began our speech. It was simply a longer version of the one we had given earlier. We spoke for more than thirty minutes, switching off and intertwining our stories. We began with the conception of our children. We in detail described how the children were diagnosed and the beginning of their treatment, including Allie's time in PICU. We spoke about our meeting and our friendship and the impact it had made in our lives. At that point, Dana spoke about Allie's final day and her final moments here on earth. She described in detail the events. She had asked me weeks ago how I would feel about this. It was interesting for me to listen to what she said, and I even said so during my portion afterwards. I told them that I honestly don't remember all those details that she described, though I do know they are all true. I just remember the love between me, Andrew, and Allie. I remember that bond. Nothing else matter to me but a few more seconds with my giraffe loving angel. I spoke about life after Allie and the ramifications her illness and death have had on my life. We finished with talking to the society specifically about the work they are doing in their chapters and how important it is to the families.
Not a dry eye could be found, not even my own. What got me was this---while reporting the current totals of our team (12 South is in at $175,000 and Allie's Angels is nationally in at $414,000!!!), I mentioned Allie's Angels. Still under the impression that most of them were unfamiliar with us, I asked, "how many of you had an Allie's Angels team in your chapter that you worked with, just out of curiosity?" Every hand in the room went up. Every hand. We all looked around and cried.
It was an honor and pleasure to be asked by the society to join them at this conference. We were thoroughly impressed with the organization and most especially with the heart of the employees. It was a 24 hours that I will never forget.
Thank you to everyone who participated in the Light the Night walk this year across the nation. Thank you for your heart and dedication to the many children with a life threatening blood cancer. Allie and Sam, as we said several times in the last two days, are just two. There are thousands. One day, I hope to say, "Yes, but there's a cure!"
Please continue to help me make that happen. It is an honor to share this journey with every person that reads this.
All our love, Jenny, Andrew, and our angel Allie (who would be 11 months old today)
Sunday, Nov. 14th--
1:45pm--I checked the guestbook this morning for the comments people had posted. I read each and every one. Today, there was an interesting post calling our attention to an article in the Dallas Morning News yesterday. My curiosity peaked, I clicked on the article. Here is what I found:
| |||||||||||||||||||||||||||||||
