April 4, 2008 Hi everyone, Life goes on doesn’t it? Despite whatever happens in our lives it goes on and there is no stopping. Holding on to hope is all we can do sometimes and being thankful for the gifts we received and realizing everything is temporary. That is what it is all about. God can take back our gifts whenever he see fit and why I will never know or comprehend. We are not God so we will never understand so we just have to hold onto our faith. Okay enough of that. Update on the walk. It has been moved to Mayberry State Park. There are pro’s with Livonia but the length of the walk would have been 51/2 miles and the comfort of the walkers may not have been that great being that we were walking near major roads. All in all Mayberry will have nice scenery, people can choose a 1, or 2 mile walk if they prefer and most of us will do the 3 mile walk. We will still have a fire-truck, face painting, and a clown along with light food so it is all good. I am hoping to see all of you out there supporting us on our first “family walk.” We are planning some neat things to promote awareness so come on down with your family, have some fun and get a little exercise as well. All funds collected will be given to pediatric brain tumor research along with helping us make our next Christmas shopping event at Mott Children’s even more special. Log into our happy hearts website, www.leahshappyhearts.org within the next week for more details. There you will find out how you can obtain pledges and how to donate. We are still in need of sponsors so if you own a business and would like your name on our t-shirts and posters please drop me a line. We are doing okay and my heart is still hurting everyday. I can’t stop thinking of Leah and I am always missing her. Kylie just finished volleyball and I must say she turned out to be a pretty good player. She is now starting track practice and I’m looking forward to cheering her on during her meets. She is also still in gymnastics and getting ready for her gym fest exhibition and I’m so glad she is staying active. Our house is still for sale and I’m sure that is not a surprise. I also want to purchase a convertible this summer since my 50th b-day is coming up. We have one car up for sale so we will see if we can get a decent price. That is all for now. Thanks for checking in on us and thank you to those that still remember us by signing the guestbook and by sending your Easter cards. Those holidays are certainly a little more difficult to get thru. Remember our walk is on May 31st so please mark your calendars. I love you Leah and I will forever miss you. Karen Kylie and Angel Leah’s mommy forever and ever

I’d like to give a special “Thank You” to my niece Sammie, and my nephew Nathan, for being so unselfish and asking friends that come to their birthday party to donate to Leah’s Happy Hearts instead of bringing them a present. They came up with this idea on their own as I’m sure they miss their cousin. Thank you to both of you for being so kind, sweet and generous. I know Leah is sending you hugs and kisses right now and smiling from up above. You are both very special and we love you. March 1, 2008 Good morning. I’ve been up since 6:00 tossing and turning so I thought to myself, “time to journal.” Thoughts of Leah going through my head but not a whole lot of memories from before diagnosis of the tumor darn it. The signs of spring are coming and it still is like putting a knife into your wound. I passed a mall the other day and the large sign said, “Easter Bunny Arrives March 5” and then I go to the grocery store and see shelves of Easter candy as soon as I walk in the door. Ugh! I’ve said it before and I still mean it, spring is the most painful time. Kids come out with their bicycles, flowers start to bloom, and it is a sign of renewal and I don’t feel renewed. Sorry, I’m not going to tell you I’m fine when I still don’t feel fine. I’m getting along and going through each day best I can but there is a void. A big void!! I long to be in an environment where there are others in the same situation or similar. That is where I am comfortable and I’m sure my destiny is in the making but for right now I’m still trying to figure out what direction God wants me to take. I know I have a purpose (other than wife and mother) in this world and by golly I’m going to find it! We have booked a date for our family fun walk and it is going to be Saturday, May 31st so please mark that on your calendars. Originally I thought Kensington would be nice but then my emotions came into play (which they always do the first time we host an event of a particular type) and I thought how cool would it be to walk past the cemetery, fire station and house where Leah was born so that is what we will do. Okay so the scenery is not going to be great but I’m hoping everyone will come out and support our first walk in Leah’s memory. It will be a 5 mile walk starting at a park and then finishing at that same park. There will be water stations and port-a-potty’s along the way and of course cars stationed if you get to tired to walk. We are looking for companies to sponsor us and they will get their names on the back of our t-shirts that each pre-registered walker will receive. Companies can sponsor us by giving us monetary donations, water, food; popcorn machines/cotton candy machines, etc… If you own a company or know of someone that may donate please drop me a line. Otherwise, please come and join us so that we will have a successful first walk. More to come on that! Leah’s journey continues. We met with the Pediatrician, Director, Nurse and coordinator of the Pediatric Palliative Care department and learned how our donation is going to help their department. Palliative Care doesn’t mean “end of life” care but rather support for the patient and families while they are battling a life-threatening disease. It can mean that they put a ramp up in front of your house so that your wheel-chair is much easier to handle, it can help spiritually, emotionally, and of course physically by helping to give these families and patients a better quality of life while going thru everything we do when we go to battle with a disease. This is something Phil and I needed when Leah was diagnosed but it didn’t exist then. I think awareness needs to be made to everyone that this type of service is available now at Mott Children’s Hospital and sometimes you have to ask for it. It is not hospice. A long term goal would be to help fund a building consisting of rooms where patients could stay along with their families and still receive medical care while staying there. Wouldn’t it be cool if in years to come they were able to do this and they called it “Leah’s House?” There is a man in Arizona that had a need for his son to have such care and they didn’t have anything like it so he started fundraising and with the help of many organizations the house was called Ryan’s House named after his son. A long term goal but a good one indeed. We are all doing well and are still trying to sell our home. We miss Leah like crazy and always will. On a good note we booked a trip to swim with the dolphins and I can’t wait but I do have a couple months to go. Kylie and I will swim with them and Phil opted out due to the fact he likes to video everything and snap pictures. He will swim with the sting-rays and snorkel with us in the lagoons though. Not a trip that we can really afford but you know you only turn 50 once and I told myself before I leave this world I need to experience a dolphin swim and I’m not going to wait until I’m 60 because who knows what shape I will be in then. Another little boy, Samuel Jones of Michigan passed away a couple days ago of the same tumor as Leah’s. This has to stop! Please keep the family in your prayers. Thanks for checking in on us and hearing me ramble on. I appreciate everyone of you and still like it when you sign the guestbook. It is so important that you stay with us during this journey and for those that have friends going thru this please know your presence is as important afterwards as it is when the family is in battle. I love you Leah and I will always miss you!!!! Blessings, Karen Kylie and Angel Leah’s mommy forever and ever

February 3, 2008 Here I am again. I felt that the last update had a bit of a negative undertone and please know that the only reason I vent about things is because I want to share my journey. Everyday is difficult and when someone says something hurtful it makes things all the more difficult…it is almost like taking two steps backwards. I appreciate all of you that follow Leah’s journey and I would like to dedicate this update to those that supported Leah’s Happy Hearts and/or our family. To all that donated their time, and/or money at our last fundraiser held at Genitti’s, I thank you! To all that sent or gave a donation to Leah’s Happy Hearts I thank you. And of course, to all those that donated items for the auction or items for the Christmas party I thank you. If it wasn’t for generous people like you we would not have been able to host the Christmas party at Mott’s Children’s Hospital which was the highlight of my holidays. In addition, I am proud to say that we are donating $10,000.00 this week to Mott’s Children’s Hospital because of your generous donations. We decided to give the money this time to the Pediatric Palliative Care department since quality of life is near and dear to my heart. What is Palliative Care you may be saying? The following is taken off the Mott Hospital website: Pediatrics Palliative Care Consultation offers active, comprehensive support for managing patients with life-threatening or life-limiting conditions. Palliative care can be appropriate at all stages of illness, not just the terminal phase, and can be provided at the same time as active or life-prolonging treatments. We can help with many aspects of care, including symptom management, communication challenges, complex decision-making, advance care planning and transitions throughout the course of an illness. We work closely with unit and hospital-based resources to offer seamless support to our primary teams, patients and families. The Palliative Care team is multidisciplinary, represented by a physician, an advance practice nurse, a social worker and a pastoral care professional. Because of this generous donation, Leah’s name will be placed on their donor wall and this means a lot to us as it will always be there so Thank You from the bottom of my heart. I know Leah is smiling up in heaven knowing that we all had a part in making this happen. We are now going to start planning a fun run/walk in Livonia to be held in late spring or early summer. This event will be very memorable and you can bring your entire family as there will be fun in store at the end of the walk. Please tell all of your friends! The money raised will be used to help fund pediatric brain tumor research and to help us with the next Christmas party at Mott’s. Stay tuned. I will post the event on www.leahshappyhearts.org once we have a confirmed date. That’s all for now. I hope you all have blessed and healthy days. Take care. We love you Leah and we miss you!!!! Not a minute goes by without us thinking about you and feeling that stabbing soreness in our heart. Karen Kylie and Angel Leah’s mommy forever and ever

January 25, 2008 Hi everyone, Thanks to everyone that launched balloons on Leah’s birthday. We will forever miss her and love her. Happy 8th birthday Leah. I am so upset at some people. I just had someone come up to me (someone who I thought had more common sense) and say the stupidest most ignorant thing one could say to a grieving parent. Ugh….I can’t believe some people. God says to forgive and I’m trying to find it in my heart to do just that and know that they have no clue or experience in speaking to people. It is a shame that some people think they are so good that they can judge others let alone counsel others. Phoney people. Please! Then of course there are some kids that think Kylie suffered the loss of her sister to get attention. Yes, this is something that was said to my daughter and she has to deal with mean girls like that saying something like that. Weird and very very cruel to say the least. I hope these people will some day grow up and realize how to treat others. Enough said. It just helps me to write down my feelings and VENT!! It is difficult to quickly get over things like that. We are doing okay and since I’m turning 50 this year we are thinking about maybe going to swim with dolphins this year and perhaps go back to Give Kids the World. I hear swimming with the dolphins is a magical experience and something I want to do before I leave this world. I also heard that Give Kids the World expanded to accommodate many more families so that is something I want to see and I get a feeling of peace when I am there. It is bittersweet; sad but comforting. Kylie has been doing cheerleading and is awesome. She is also still doing gymnastics and will be starting volleyball soon. I love watching her do any type of sports. She is doing well all things considered. She is a kind loving soul and has been volunteering at Sunday preschool for the last 6 months or so. I signed up to volunteer at the Ronald McDonald House and am hoping that I can start soon. I read on another grieving parent’s website that they found this very comforting and rewarding and I think I would feel the same way. Speaking of volunteering, for those that get MCare magazine, please watch for the article about Leah’s Happy Hearts volunteering at Mott’s this coming spring. I think it will come out in Late February or early March. We will be planning a fun run/walk in late spring so please stay tuned and plan on bringing your whole family for a memorable day of fun. That is all for now so please take care and have a blessed week or two. Karen Kylie and Leah’s mommy forever and ever

January 11, 2008 Happy 8th birthday Leah. 8 years ago today at 6:00 a.m. you came into our lives and family and I was so so happy. I was probably holding you right now glowing with joy and little did I know I would only have you for 5 1/2 years. 5 1/2 wonderful, beautiful years. Here I am again on your birthday missing you like crazy and still asking the same questions, why? Why her? Why is there no cure? why, why, why?? I still think of you everyday every minute and no matter where I go or what I do you are with me. I see other families and I feel cheated, yet I feel happy to have had you in our lives for 5 1/2 years. I feel lucky to have been your Mommy and that you were so special and beautiful both inside and out. I know God sent you here for a reason but I can’t seem to figure out why he took you back so soon. I miss you sooooo much. Why is the world so worried about stupid things when children are dying and there is no cure for the illnesses they are dying from. Like someone wrote in my guestbook, soon we may all be forced to have digital T.V.’s……please, where is this world going??? Our priorities are in the wrong place people. We worry about what we are wearing, how much money we made, blah, blah, blah, blah, blah. Ok, I’m sorry, not everyone but a lot of us and I was guilty myself. I’m sorry I didn’t send Christmas cards out this year but I just didn’t feel up to it. Next year I promised myself I will do a family picture because Kylie needs to know that she is special too and we are still a family. My little Leah, if you were here I would throw you a party and we could bake a cake together since I have more time now being the retired woman I am. I would buy you your favorite things and make macaroni and cheese for you. For dessert, you could have strawberries, cake and ice cream and then you would look at me and say, “you gave me much.” Oh how I miss you. Instead today I will release balloons , 8 purple balloons and tie several fun balloons to your grave blanket. I will lay a card on your blanket and perhaps Daddy and I will go out to eat at one of your favorite restaurants. It really stinks without you. I will continue to take good care of Kylie as I love her just as much as I love you. She just got braces with pink and orange bands and I wish you were here to see them. I will try to be a better person and a better Christian so that with God’s grace I can see you again. I’m really trying, not there yet but I’ve come a long way and I’m becoming closer to God even though I am still angry. Gee, it’s weird how that works. Happy Birthday Pumpkin! I will carry you in my heart forever and I know you have a piece of mine with you for I can feel the void. I will look up to the sky and I know you will be that little star looking down on me. I will take care of your pretty light too and all of your favorite possessions that lie in your room. Please keep us strong and I can’t wait to see you again. Happy Birthday!!!! Your mommy forever, Karen

2007 Updates

<Back