Update Kelly 8/28/08
Thursday, August 28th, 2008Hello Everyone,
As far as medical updates on Kelly, no news is good news. August has been a very busy month for us. Her birthday was August 6th and she turned 6 - her golden birthday. Kelly was also asked by the child care specialist if she would like to be part of a press promo for the Children’s Miracle network. On her b-day she got to meet Miss America and Miss Illinois. The event took place at Diary Queen in the city and Kelly served the customers right along with Miss America. I was also just contacted yesterday by the Pediatric Cancer Association, after seeing the pictures of Kelly and Molly they would like to do a story on Kelly and her journey. This is huge because it goes outside the brain tumor world and covers all pediatric cancers and is a nationwide publication. I’ll be sure to let everyone know when I know more. The more exposure/experiences I can get for Kelly the better. It brings attention to pediatric brain tumors but also all pediatric cancers. Pediatric cancer research gets less the 3% of all cancer research funding - SAD. Kelly started horse therapy a couple of weeks ago and she absolutely loves it. She goes for 1/2 hour a week at the Hansen Center and to her it does not even seem like therapy. She rides eastern saddle, that is harder because she needs to use the reins to balance and there is no back for her to rest or slouch. She is working those core muscles and we see a major difference with just a couple of sessions. We also went August 9th to see the Wiggles and we were lucky enough to do a meet and greet prior to the show - big deal for little kids but I must admit I was also excited. They are much skinner in person, but all VERY nice. August 13th, I took the girls to see “Walking with the Dinosaurs” at the United Center. It was incredible Kelly loved it, Molly was scared. My Kelly sure does love dinosaur’s, I think we can thank Mr. Darrell for that. Mr. Darrell also met us at the Field museum that Monday and gave us a great tour. For those of you who do not know who he is, he was Kelly’s pre-school teacher who is working on his thesis to become a museum curator. When Kelly was first diagnosed and would not take her head out of the blanket, Mr. Darrell would come to visit and he was one of the few who would get a response from her, she still adores him and so do Gary and I. He is wonderful and has kept up with Kelly’s progress all while working on his thesis. Kudos to Mr. Darrell. August 14th. the village of Willow Springs had a classic car show/benefit for Kelly. More on that later. August 16th, I had the girls combined birthday party (Molly’s b-day is August 24th). I can call the b-day a success, my house looked like a toys r us store and then some - thank you to everyone for coming out for the “CELEBRATION” because that is exactly what is was a celebration of my girls lives and the wonderful support system I have - the presents for the girls were a bonus. August 20th, Kelly, Molly and myself were invited to the Sox game sponsored by the Children’s Miracle Network. The girls and I got to go on the field and meet some of the players. We also had great seats 300 club level. The Sox kicked butt and it was an awesome game, lots of home runs so the girls got to see the scoreboard go off quite a few times. She loves AJ. August 21st, Kelly started her first day of all day Kindergarten and did awesome, she loves it. I was worried about the full day with her endurance, but she is handling it just fine and loves it. She is excited because she can eat lunch with her friends and she gets to go in the cafeteria. Like I said it was a very busy month, but a great month for all of us. We went for chemo on Tuesday and well, that just sucks. We have all settled into our new “normal” lives and I do not look at Kelly like she is battling for her life, I look at her like Kelly. Boy when I go to the hospital it’s like BAM slapped right in your face what we are dealing with and how far we are far from this being over. Talk about a major reality check, I am very happy when we leave, knowing we do not have to go back for another 2 weeks.
On August 14th. the Village of Willow Springs had a classic car show/benefit in honor of Kelly. Tonight the Village of Willow Springs presented us with a check for $3500.00 for Kelly’s fund. We went to the board meeting tonight and did some press pictures, I’m not sure what paper but I will let you know as soon as I know. We did pictures with the mayor and the board, after the check presentation I got up in front of the mayor and the board and did a speech thanking everyone for their continued support for Kelly and my family. Please see below:
Speech given at Thursday August 28th. Village of Willow Springs board meeting:
I would like to start off by thanking Ernie Moon and the wonderful job he did in coordinating the highly successful Classic Car Show. I would also like to thank the mayor who throughout this journey has always kept a close eye on Kelly’s condition by either calling me at home or attending the various events benefiting Kelly.
We moved to Willow Springs 5 years ago to raise our children in a small community. When Kelly was first diagnosed all I could think of is I’m moving home, were putting our house on the market and I’m moving home. For those of you who do not know me, I grew up on the south side - Oak Lawn Mt. Greenwood area where everyone knows everyone and your known by what parish you belong to. If you didn’t know me, you knew my brother or my sister this being sometimes good but could also be bad if you were doing something you knew you shouldn’t be. I come from a family of 6 - small compared to some of the families in the neighborhood. I wanted to move back to Oak Lawn because I felt like it was my home - my security if you will. It was actually my mom who talked me out of it. She said Ellen so much is changing so fast in Kelly’s life right now all she knows is you, Gary, Molly and her house - SO PULL IT TOGETHER AND PULL IT TOGETHER NOW, I was a mess.
Those first few months of treatment were horrible, every time we saw the Dr.’s it seemed like we got more bad news. My family, my support system would call and ask what they could do to help. All I could think is I have no idea what to do myself how can I tell them what to do, I was completely lost. I look back at those times and so much is a blur and to be honest I do not try to hard to remember anything.
Kelly is am amazing child, just talk to her for 5 minutes and you will understand why I say that. She has been through so much, 2 -7 hour surgeries, 30 radiation treatments, 7 months of high dose chemo (where we lived at the hospital for 2 1/2 weeks of every of those 7 months) 6 months of low dose chemo and is still on a clinical trial. She received to many blood and platelet transfusions to count and hundreds of hours in physical therapy, she just started walking again after 13 months. She is completely blind in her left eye, lost all her high pitch hearing in both ears requiring hearing aids and she has lost all pituitary functions. This was a child who was outside in the backyard playing baseball with her dad the night she was diagnosed, no symptoms other then she threw up twice. Talk about a childhood, but I just think she is here that’s the most important thing. Kelly is the most genuinely happy child you will ever meet. She cares about everyone, she is always concerned about her sister no matter how much they fight and always wants everyone to be happy. Her famous line about Molly is I love her mom, I just do not like her right now - sisters I know I have 3 of them!
Kelly has kind of become the town celebrity although I wish for different reasons - oh well it could be worse she could be know as the town floozy. Through all of this she still continues to amaze me everyday.
In closing I would like to say thank you to Mayor Alan and all of the residents of Willow Springs who have opened their hearts to us as a community and made this now feel like our home.
I’m not sure what the future holds for my family or for Kelly, but I do know it includes Willow Springs as my home. I ask for your continued prayers for Kelly, but also for Molly. This is hard for her in different ways.
I feel honored to be Kelly and Molly’s mom, Gary’s wife but I also feel honored to live in a community like Willow Springs.