December 17, 2005 I’m sorry it has been awhile been as you can imagine life has been difficult. It is getting worse (if that is even possible) and sometimes I feel like Scrooge or for those of you that saw Christmas with the Cranks I feel like the Dad in that movie. I just came from the cemetery where I left a Christmas stocking wrapped in plastic with a raggedy Ann doll sticking out the top and a Dora plastic play set. God, I miss her so much;. Kylie has become my reason for living so thank goodness for Kylie. This is the most unbearable pain and it is a chore to get out of bed everyday. My mind goes back and forth from being angry to being very thankful for the 5 _ years we had with Leah. I’m hoping someday the anger will vanish and I will find comfort in knowing I will see her again. Some of you are still saying how well I am doing. Ah! You have no clue. I function because I have to. This doesn’t mean that outside of work and get-togethers I am not crying most of the time. You do what you have to do people. You would and could do the same. There is no choice in the matter. I have to go on. I was at the mall the other day and it hurt so much knowing I was in all the stores that Leah and I used to go to on our Wednesdays together. I walked around with my head down thinking how meaningless this all is as the Christmas music was playing in the background. I couldn’t help but feel badly for all of those parents out there that always wanted children but for some reason could not have them. I feel bad for them now and I have much compassion for those that wanted a family but had to adjust to life without children. I wonder how difficult the Christmas season is for them? ?? Or how about the very elderly that now have no-one to care for them? When I think of these people I sometimes feel lucky. Again it is emotions going back and forth, anger –luck, anger – blessed. I am not doing Christmas cards this year and have cut way down on my shopping. I hope everyone understands and realizes I’m just not into it this year. In fact we will be doing something totally different this year and I will tell you all about it after Christmas – I promise. Church is the one thing that has been helping me get by along with trying to really understand the Bible. Without faith, we would have nothing. So instead of the usual greetings I will say “Happy Birthday Jesus.” May you all find something to feel thankful for this month. Father John came over and spent some time with us and we went to the cemetery where he blessed Leah’s stone. Thanks to Father John and to all of you that have not forgotten us. Thanks to all of you for the special things you have done for us or sent us or perhaps just listened to us. I will not mention names for fear I may forget someone so thank you. We went to the candle-lighting ceremony at Kellogg Park in Plymouth put on by Compassionate Friends where they honor all of those children that have died. It was a nice tribute to all of those poor children and I’m glad we were able to partake in this memorial service. Thanks Jackie for meeting us there on that cold, cold night. Your support meant a lot. Leah’s birthday is next month so we will prepare a small ceremony for her. I love you Leah. The pain is unbearable most of the time and I find that I am crying more and more each day. I love you Phil and I love you Kylie for you are my reason for living. Have a safe couple of weeks, Karen Kylie and Leah’s mommy forever

December 7, 2005 Hi all, We are having a tough time during this season. Taking things day to day and sometimes minute by minute. Thanks for the delicious Monday meals and for all that are still there for us. I had a great time helping Allie's Angels at there last event - thank you for inviting me. I don't feel much like writing today so I left a beautiful story that my friend Lisa found and sent me. It tries to bring a positive outlook on things that happen such as Leah's flight, but in the end I always say, "but at the expense of my daughter....it's just not right." It is a beautiful story and it deserves to be read. Best Wishes to all. Read the story here. Kylie and Leah's mommy forever

November 27, 2005 Well we are back from Chicago where we spent Thanksgiving weekend. We had a nice time but now that I am home I find myself crying hysterically so I thought I better write down my feelings. Right now, because I don’t want to offend anyone, I won’t say how I really feel about life. I just think it is so unfair and I feel cheated and robbed. In addition to trying to control my own grief and be able to function each day I have to tell you that Kylie is just now starting to grieve and boy is she grieving. For those that know her please be kind to her. She is having such an incredibly hard time right now and everyday of the Chicago trip she would cry at least twice. She told me she doesn’t know why she is crying but she wants to cry all the time. She said things that show her insecurity right now and make me so sad. How can someone so beautiful be so insecure? I have to remember that she just experienced something that most people at her age don’t have to go thru. True everyone loses someone eventually but to have to lose your best friend and sister who was only 5 and try to understand it all at the age of 9 is asking a lot. Please pray for her and for Phil and I so that we will be guided in a way that will help her. It is going to be a tough December and an even tougher 2006. Phil is putting up some Christmas decorations although we have scaled down quite a bit this year. I can’t handle all of the inside knick-knacks so we are just doing lights outside and our tree inside. I just had to shut the Christmas music off because I can’t seem to take it anymore…..what fun is it without Leah here. Kylie is visiting her cousin today so the house is quiet. Oh how I wish I was younger so I could have another baby. I would like to have one for Kylie since she loves babies so much and it might help to focus on something happy and positive. I miss Leah so much I can’t stand it. I think of her every minute of every day. Grief is becoming my friend. You may see me going about my daily errands but I’m torn up inside. I know it could be worse but I am still living a nightmare. I am thankful for the 5+ years we had with Leah and I have to say they were the best days of our lives. There will never be a better 5+ years than those years we shared. I will cherish all of our memories and try to create some new ones between us three. Speaking of memories, when we were putting up the tree last week Kylie was helping us put the ornaments on the tree and dig them out of the boxes. She was sitting on the couch staring at one and she called me over. It was a green bulb with a picture of Leah on it and I noticed there was a button and a record button. I feared the battery had worn out as I noticed the button had been on play and it had been stored away since last year. Well when I hit the button thank goodness we heard Leah’s voice saying, “I love you Kylie, I love you Mommy, I love you Daddy, I love you Batman and I always will. You can bet I have been hitting that button everyday and I even recorded it on another recorder. That might be a neat thing to put on this website if possible. When Kylie heard Leah’s voice recording she grabbed her bulb from last year and said that she wanted to re-record it since she hadn’t mentioned Leah in her last message. She went into the bedroom with her bulb and came back with her newly recorded message. It now says, “I love you Leah, Mommy and Daddy. You will be forever in my heart, no matter what happens I will always be with you.” I would like to thank everyone again for listening and just being there. Thanks Chris and Fraser for a wonderful Thanksgiving dinner. Thank you to Sue Vealey for the most awesome scrapbook I have ever seen. The pictures you picked of Leah and the associated poem you placed with each picture is something I will cherish the rest of my life. It touches my heart so much that someone who never met us would do this for us. There are wonderful people in this world and I’m sorry I can’t mention you all by name right now but there are far too many to list. God bless us all and keep us all safe and healthy. Karen Kylie and Leah’s mommy forever and ever

November 21, 2005 I’m breathing still. I recently read another journal update of a beautiful little girl that was taken up to heaven by this horrible tumor too. Her mother chose to write about all of the things she missed about her daughter. I think I would like to do the same as I think about these things all the time. Leah, I miss you so much. I would do anything in the world to hug you and kiss you. I still can’t believe you have left this earth. There are so many things I miss about you and I will begin to list some of them now: 1. I miss your infectious giggle, the way you lit up a room with your open mouthed smile. 2. I miss your Eskimo kisses and your wonderful kisses when you would loudly say mmmwaaa as you kissed me. 3. I miss sleeping with you next to me and your little hand on my shoulder so you would make sure Mommy was always there next to you. 4. I miss getting up in the middle of the night and helping you find your way to  the bathroom. Yes even though sometimes I was so tired I miss you waking me up and having me lift you off the bed to walk to the potty. 5. I miss picking you up from school and having you look up with your big open mouthed smile and yell momma as you came running up to me. 6. I miss watching you play with your friends, Katy, Morgan, Olivia, and Ashlyn. Whenever I see them I believe it is so unfair that you are not with them playing along right beside them. 7. I miss watching you swing on your new swingset and climb up the ladder ever so carefully so you could slide down with glee on the big slide. 8. I miss you saying your heart is happy. I even miss the few times you told me it was broken. It made me sad but it was so darn cute at the same time. 9. I miss going to the green restaurant “Leo’s” coney island with you and then stopping for a cookie at Mrs. Fields afterwards. You loved to go to lunch with me on Wednesdays and I loved it just as much. 10.I miss watching you play with your sister when you would head downstairs to go and play house. I can still hear your barking and meowing as you always got stuck being the dog or cat. You loved it all the same. 11. I miss watching you and your sister read books together. I miss Kylie reading to you. I miss reading to you in my bed and after I was done with the book you always asked if you could read it to me. 12. I miss watching you play school by yourself and you would pretend to be the teacher. As you read the book it was so cute how you would hold the       book open and show the pictures to your classroom full of pretend kids. 13. I miss you laughing at my behind and saying it jiggled. 14. I miss swimming with you in the pool at the swim club. 15. I just plain miss you. I want to hug you so bad I can’t stand it. I miss seeing your beautiful face, your blue eyes with your long long lashes. I miss your perfect toes and fingers. I miss your little bomm-bomm and chasing you around saying “I’m gonna get your bomm-bomm. 16. I miss watching you wheel your little suitcase over to the neighbors with a big smile on your face because you were going to spend the night at a friends. 17. I miss giving you too much of some kind of food, say ice cream and you would look up at me and say, “you gave me much.” 18. I miss you holding your arms out and saying I love you this much and I would always say I love you more and then you would say I love you more and we would go on and on. 19. I miss taking you to the grocery store and oh how I wish I would have taken you with me the Saturday before you flew to heaven. 20. I miss you eating all of your pea’s and your green beans because you loved them so much. 21. I miss watching you play on the computer, especially puzzlemaker when you would make those characters make those funny noises. We would always laugh together about that. 22. I miss playing Sequence with you and the Guess Who Game. 23. I MISS YOU!!! God Bless, Karen James Kylie and Leah’s mommy forever and ever

November 8, 2005 Well here I am on a day off from work and I am missing my baby so much. I was looking at pictures last night and she was so perfect. How can someone so perfect be taken from us. I don’t understand nor will I ever understand. All I can do now is try to live my life the way God would want me to and hope that I too will go to heaven so I will be able to hug her again. I have decided to do all Christmas shopping from catalogs this year or at least a good chunk of it. I went to the mall the other day and couldn’t handle the ho-ho-ho music. It is going to be a tough year for sure. If we are distant to some this holiday season please understand because we miss our baby so much. I keep hearing her voice when she said “am I going to die?” I also remember her standing in the hallway and I was kneeling down in front of her and she said, “If you or I went to heaven I would miss you, Kylie, Daddy and Batman so much” and then hugged my neck as tight as can be. I always remember things like that. We would talk about heaven sometimes and I also remember her lying in her bed with tears in her eyes looking at her pink flowered light and saying, “I would miss my pretty light.” I talked about heaven a lot with her so that she knew the possibility existed that one of us could die and that we never knew who God was going to call home first and letting her know it is usually the mommies. I would then talk a lot about when she had kids so that her mind would then think about the long life she would live to steer her away from thinking it could be her. I would always tell her that when I die I would be a little star looking down on her and I now wonder if she remembers that as I look up at the sky at night. I always look for a little star above our house and say hi to her. We made it thru Halloween and I felt like Leah was walking with us. Kylie had some friends from her school over along with their Moms so we all walked together in the misty weather. Tough day. We went and bought a new Christmas Tree at Canterbury Village because I think it is important that we create a lot of new memories and cherish the old ones. We will give our old tree away as I know it would tear me up to put it together without Leah physically here with us. Kylie helped us pick out a tree that is pre-lit and foldable and beautiful as well. Speaking of Kylie, she is having a really tough time now. I think it is really hitting her now and she is regressing so much. Please keep her in your prayers. She is very lonely when at home. We went to a place called Sandcastles which is a grief support group for children and they express their grief thru artwork. Kylie begged to go home as soon as we walked in and I told her she should just try it and then decide. Lo and behold at the end of the session she said, “I like it here, I want to come back.” She will attend the sessions every other week while still seeing a social worker every week. Well please keep us in your prayers for each day becomes tougher to go on. Tougher to get out of bed each day and keep going for it is a long journey ahead of us. Please keep Jacob, Cameron, and Sydney in your prayers as well. Please keep the messages coming because we need them more than ever right now. Thanks for all your support over the past year; it is something we will never forget. I really hope I get the chance to make a difference is someone’s life someday and that I will be given the opportunity to help raise money for a cure and some answers as to how these precious kids are coming down with this &^$#@)* tumor. I love you Leah! God Bless, Karen James Kylie and Leah’s mommy forever and ever

October 31, 2005 Well it is Halloween and I am missing Leah so much. Oh how she loved to dress up and go trick or treating. She was talking about it several months ago and asking how much longer it would be before she would get this chance again. We bought a small pumpkin and painted a red heart with a happy face on it and placed it on her grave. I am so sad and the pain is sometimes unbearable. Everyday I wonder how I am going to make it through and somehow you just do. I must say though, as I glance at the pictures of this beautiful child, how blessed Phil, Kylie, and I were to have her for 5 years. She was such a joy and a blessing in our lives; such a beautiful child with porcelain skin and eyes as blue as the ocean. Her smile lit up a room and it was always an open mouthed smile full of happiness and a love for life. I miss you so much pumpkin and please know that you will be with us in spirit as we walk the streets with Kylie trick or treating. I will never be the same…..our lives will never be the same without her. Thanks to everyone that took the time to share your favorite memory of Leah with us. I love recalling fun things about her and what stands out in everyone’s mind when they think of her. Please pray for Brant’s family as he just earned his wings yesterday. Brant has a webpage under caring bridge (Brant_thomas, and the state is IA). Please continue to pray for my family so that we may find some peace sometimes and have our faith restored. Please remember all the children battling this life-threatening disease and those that passed on due to it. Their families need constant strength and energy to go on for I know how draining it is. Hug your children and love them every minute of every day. God Bless us all. Love, Karen Kylie and Leah’s mommy forever

October 23, 2005 Hi all. Nothing much new other than it hurts more and more each day. I am so drained. I feel so tired as it takes a heck of a lot of energy just to get up everyday and do the things one must do. It is the worst kind of tired. Much worse than stress or physically tired. It is just plain draining!!!!! Some days I just look ahead and feel that there is such a long painful journey ahead of us. Let me tell you folks, this is not something that gets easier with time. I know that from now on when I laugh it will never be the same fulfilling laugh I had before. Our good times are just not complete with our little pumpkin. Oh you may see me smile or laugh at something someone did, but most of the time I am struggling trying to hold back tears a second later. I’m wishing Leah could be here to laugh with me. The last few days I have been envisioning her face crying when she would say, “I don’t want to have a tumor.” I hated seeing her like that which wasn’t too often but certain things seem to stick in your head each day and that is what I keep hearing now. I hate when I keep thinking about memories like that. I need to keep remembering that she would say “My heart is happy”. Since I don’t feel much like writing I am going to ask all of you to do some writing for me. Please send me the most memorable moment you have of Leah and if you didn’t really see her much or know her, please send me the most memorable moment you can remember hearing about. You can send this to the guestbook or if it is something that you feel should be kept private, you can send it to my hotmail account which is listed on Leah’s website. Thanks for listening. I don’t want to bum everyone out by sounding negative each time I write but the fact of the matter is, I am depressed, angry, confused and sorrowful all the time right now. I really do appreciate everyone’s support and prayers and I love when you sign the guestbook. Thank you, Thank you, Thank you for being there for us. The support we have had over the past year has been overwhelming. May God bless us all with peace and may the world become a healthier place with less cancer and a cure for brain tumors just around the corner. A cure that will be shared amongst everyone. Love, Karen Kylie and Leah’s mommy forever and ever Til we meet again baby, I know you are that little star looking down on me

October 19, 2005 Today was tough. I have had Wednesdays off since Leah was born and today was the first Wednesday without Phil since Leah flew home. My first Wednesday home alone. Yes, Wednesday was the day that Leah and I would spend together, playing games, shopping, going out to lunch, etc….. I started the day off by going to the cemetery and cried as if it was the first day without her. I brought some holy water to the cemetery and spread it over her gravesite. Once home, I felt the need to see her so I watched a DVD of our fun times from February – beginning of June. I bawled my eyes out worse than ever . To see her graduate from pre-school at St. Mary’s and limp over to the slide as they called her name was so sad and it felt like yesterday. She proudly slid down the slide and when she got to the bottom she stood erect and looked at me with her little smile and her crossed eye. I remember that day hearing the graduation march song and wondering to myself if that was going to be the only diploma she ever received; The only graduation she would ever experience. Sad to say it was. She was always so happy and her spirit will live on forever. I hope to God I am reunited with her again someday and I can feel her warm hugs and kisses. It is no fair. We were cheated and robbed and so was she. Kylie – she is doing ok but regressing a bit. I won’t go into detail but the way she is acting is very much expected. She misses Leah a lot and feels lonely much of the time so we try to do a lot of play dates. She hasn’t been able to do her gymnastics because of her broken finger but she will get back into it starting on November 2. We went back to work this week and it is difficult. I feel as if my world stopped and everyone else’s is still going. People are laughing and going about their lives as normal; Why shouldn’t they be? All I know is that I am not part of that world anymore and my perspective on life is totally different than I ever thought it would be. I wonder if some really realize how much of a tragedy this is and how it is life changing. I will never ever be the same person I was before nor do I want to be. Don’t tell me time heals all wounds because it doesn’t. We will try very hard to learn how to cope as we go thru the motions of daily life and try to give Kylie as normal a life as possible. So with that said, the thing to ask is “How are you coping?” My heart is ripped into shreds and that will never heal. It is a permanent scar that changes the way you think, act, and feel. I want to thank everyone again for your support, prayers, and donations to Make a Wish and the ABTA. The Monday meals continue to be delicious and we thank God for good friend’s everyday. Please let us know you dropped by and sign the guestbook. Please keep Jacob, Sydney, Bailey, and Cameron in your prayers as they battle the same damn tumor. Please keep all of the families that lost a child to Cancer in your prayers as well. That’s all for now. Blessings, Karen Kylie and Leah’s mommy forever

October 13, 2005 I know it has been awhile since I wrote, but to tell you the truth, I really don’t feel like doing much of anything these days. I need to go thru this and there is no way to get it off of my mind so it is what it is. Phil and I are going thru the motions which is about all we can do right now. We do what we have to and that is it. Kylie was playing football with Dad and in the course of catching the ball her pinkie finger on her right hand bent the wrong way and she fractured the bone right below the knuckle. Yep, she has a cast all the way up to her elbow and it is her right arm. She will have to leave this bright pink cast on until November 1st which she is not too happy about. Always something to keep us going. I still am going to open up a 501c3 corporation but decided to slow down a bit and figure out what exactly we will be doing and what the funds will be used for. I need to come up with a mission statement so to speak. I also need to create a board of directors so this is not something I can do overnight. It is on my list of “Things to do.” Leah’s stone was put in the ground at the cemetery so it will be easier to find for those that stop and pay her a visit. The hours at the cemetery are now 8-4:30 which will make it impossible to get to the cemetery on working days. I know she is all around me though so I will just talk to her wherever I am at. Our house is filled with pictures of our girls in every room you walk into. I still have not moved anything in Leah’s bedroom nor do I want to. I find great comfort in lying on her bed and snuggling her stuffed animals thinking about the fun times we had. Boy her chuckle sure is missed. She would laugh at so many things and always lit up the room wherever she was at. I remember her open-mouthed smile and the way she would yell “Mommy” when I would go to pick her up at preschool. Gosh I miss that. She was so looking forward to Halloween and Christmas so it is going to be very tough without her physical presence. Thanks to everyone for your constant support, cards, phone calls, and guestbook entries. I’m sorry that I haven’t gotten around to calling you all back; it’s just that I don’t feel like talking much of the time. Thanks Sandy and Steve for a delicious dinner and an enjoyable evening. Thanks Dave for the tickets – wow that was so generous of you as that will be a good game. Thanks to the NCS Moms for cooking us our Monday dinners. Thanks Dan for the awesome oil paintings of our girls. Ok, I know I’m leaving some people out but I was just thinking that the list will go on and on so Thank You All! We appreciate it so much. I don’t know where we would be without all of our good friends. I’ll try to write more often. I’ll leave you with a thought I read in a book a friend let me borrow (Thanks Sandy!). It says that 1,000 years in heaven is like one day on earth. Wow, if that is true Leah will barely even notice that we have been apart. We will be with her before we know it. I will hold on to that thought. We love you Leah and we miss you! Still breathing, Karen

October 2, 2005 I can’t believe it has been 2 months since Leah went to heaven. It is Sunday and I must say Saturdays and Sundays seem to be the worst. Yesterday was the worst day I have had yet. Not sure why as it just seemed to hit me for no apparent reason; I cried hysterically for about an hour and then watched video’s of Leah and cried some more. I look up at the sky yelling where are you!! Afterwards I took a lawn chair to the cemetery and sat for about 30 minutes talking to Leah. If all my days were like yesterday I would not be able to go on. I miss her so much, her laughter, her hugs, the way she lit up a room with her wide open-mouthed smile. God, I miss her. I want her back yet I know that won’t happen. I must now wait to go to heaven myself (if I’m lucky) where she will greet me with open arms. I’m going back to work soon and I’m having mixed feelings. Will I be able to really put my heart into work when something so tragic has happened in my life. Everything else in life seems so trivial to me now. Time will tell I guess. Kylie is a handful but I’m really trying hard to make things easy on her now. She has mentioned that she misses Leah a few times but other than that she really does not want to talk about it. I am still investigating some other options for her as a means of relieving her grief. I just signed up for a guided meditation class that starts Tuesday so I am pretty excited about that. This week I am also going to try to find out how to open up a 501c3 (non-profit organization) in Leah’s name. If someone knows how please drop me a line. Thanks for listening. Please continue to pray for my family and me so that we may find the strength necessary to try to enjoy each day for each day we have is a gift. Each breath we take is a gift. Leah and Kylie were gifts and we never know how long we are going to be able to keep our precious gifts. Please keep Cameron and Sydney in your prayers (same tumor as Leah’s) as they are showing signs of their tumors progressing. Boy I hate these tumors and something has to be done to find a cure. Blessings, Karen Kylie and Leah’s mommy forever and ever

September 24, 2005 Hi all, I keep forgetting to mention, if you haven’t checked out the new song on Leah’s website, please go back and listen to it. It is awesome and written and sung by the very talented Lindsey Pyrkosz whom I am proud to say is my friend. I will treasure that song always and hope that someday I hear it on the radio. Also there is a new article written by Livonia’s Fire Chief who is also Deacon at St. Andrew’s Episcopal Church and it is a beautiful tribute to Leah with an amazing sketch of her. Thank you so much Deacon Alan! You will also find the article located within the “In the News” section of Leah’s website. Not much else to report. It is very very tough and it feels as if I will never be happy again. Yes, we go thru the motions and try to do things with Kylie but it just doesn’t feel like my heart is really into anything these days. I don’t sleep well so I walk around like a zombie and I can’t take sleeping pills everyday for I may become addicted. So I will just go about my life as a zombie for now. I have to say again as most of you can imagine, I am now a minority……part of a very small group of parents that I never wished to be a part of. This is the most difficult thing that anyone would have to go thru and why these beautiful children such as Leah keep getting these tumors just ticks me off to no end. How can someone so beautiful inside and out be gone? It still all seems so unbelievable and I feel just numb from it all. I pray that God will lead me down the right path because right now I feel mixed up and confused. Kylie is doing ok. She is doing great in school but I have noticed that she is very very sensitive. She cries hysterically for very small things and I’m sure it is her way of getting her grief out. It is going to be a challenge guiding her in the right direction but with the help of her Christian school I am confident she will do fine. Please continue to pray for our family so that we may have the strength to get thru this. Thank you to all that have supported us in the past and continue to do so. Please sign the guestbook so I know you are still there. Thanks and God Bless. Karen James Forever Kylie’s and Leah’s mommy

September 13, 2005 I have the need to put something on the same page as Leah that is more appropriate than the last entry. I hear a lot of people saying to me that we seem to be doing better or seem to be doing ok. The truth of the matter is that we are torn up inside and still cry everyday. My problem is that I can’t sleep at night. I sleep for a few hours and then wake up and relive the day Leah had the pain in her head thru the last day when she became an angel. I wish I could get over this but I keep waking up saying, “If only”. I long to touch her, hug her, kiss her and snuggle with her. The pain is unbearable. Just because we are breathing and going thru life trying to find some joy within each day does not mean we are doing better. You just do what you have to do in life and right now we are trying to learn how to cope without her. Yes, we try to do something once or twice a week that gets us out of the house but we always end up talking about Leah. Just because you may see us outside or at the store does not mean we are over it. This is something that walks around with you whether you are buying shoes, eating ice cream, swimming, etc….It never leaves your mind. Everywhere you go you are wishing she was here with us. A piece of my heart that will never be filled in until we meet again in heaven. I still check on several kids out there that are battling cancer. It is so sad and puzzling that they do not know what causes it. It just makes me crazy….I am the kind of person that needs answers. Everything should have an answer. I saw a Frog on a little boy’s website (Jacob) and it said that Frog stands for “Fully Rely on God.” I thought that was pretty cool since the sign we really think is significant was the smooth green frog appearing on the sidewalk. Thanks again to everyone for your support. Please keep all of the children battling this disease in your prayers and for Leah’s sister who needs a lot of support. Love, Karen Forever Leah’s mommy

September 11, 2005 The nerve of some people. We were having a tough time and to top it off someone said something so hurtful to my husband and laughed. It was about the worst thing anyone could say. This person said, “you are lucky your daughter died, why don’t you grab your watering can and go water the flowers.” How low can you go? I have been so upset about this I feel as if I am back to where I was last month. May the Lord be with them and enter into their lives for they are the rudest people I ever met. I’m so sorry Leah that there are people living in the world like this but of course this isn’t heaven. I’m so sorry Leah that they said this. Shame on them! All I keep saying is that “God knows.” The days are getting tougher. This is something that does not get easier with time. The truth of the matter is when you lose someone you love; you lose the present along with the future. Every day we say to ourselves, “Leah would have liked this, Leah should be here at school laughing and learning, Leah likes this kind of food, Leah would love this new bigger bike.” We are filled with grief and once in awhile saying “I wish I would have read her more books” and things like that. This is something I don’t think you can ever be at peace with. The “whys” and “how” and wishing for more time or one last hug rotate in our minds constantly. I do hope that once we go back to work people realize that we are not healed, we will never be healed, and this will be a learning process that will take years. It will take years to learn how to cope. There will always be a part of my heart missing and her memories will fill our days. Please continue praying for all of the children still battling this tumor and for the families that are struggling like us to go on with their lives after losing someone so precious. The Katrina victims are always in our prayers as well. Karen Leah’s mommy forever

September 7, 2005 Hi all. People tell me to write but I really don’t have much to say. Life has been tough. We miss our precious baby so badly; there is no pain like that of losing a child. This is not a parent, grandparent, aunt, uncle or even spouse. It is a child…a child that we created and a child who has the personality that our family combined created. I can’t tell you how badly I miss her or how badly it hurts. Unless you have been through this you have no idea. Kylie is having a rough time as you can imagine. It is tough enough just getting ourselves thru each day but we also have to focus on helping Kylie to have as normal a life as possible. We are trying our best to create smiles for her each day even though deep down we are all wishing Leah could join us in our adventures. There is an article in the Detroit News today (9/7/2005) in the neighborhood news section. It is in the Livonia and possibly the Northville, Plymouth neighborhood news section available today at news stands. . It will be available online tomorrow by looking in www.detnews.com and going to Wayne county. If you receive the paper to your home it will be delivered tomorrow. It is really a follow-up article from the previous Detroit News article talking about the day to day struggles we have now that Leah is in heaven. We talk to Leah daily and I’m sure she can hear us. She is with God I’m certain and we can’t wait for the day when we can hug her again. I am going to try to schedule an appointment with a lady that claims she can talk to angels. I have an open mind and who knows what she will tell us. I would love to talk to Sylvia Brown as well but I’m sure there is a long waiting list for her. Thank you to those that continue to send kind thoughts our way, meals on Mondays, and inspirational words in our guestbook. Our lives will never be the same but we want you to know that people like you are helping us through each day. I love you Leah! Love and Peace to all, Karen Leah’s mommy forever

August 28, 2005 Hi all, I wish to share with all readers a wish list that was brought to my attention. It is all sooo true and I think it is helpful in letting people know how we feel. I wouldn't post this if I didn't believe in it 100%. Thanks for checking on us and for your encouraging words you have written in Leah's guestbook. We miss her very much and will always love her. Leah's Mommy forever Bereaved Parents Wish List (author unknown) 1. I wish you would not be afraid to speak my child's name. They lived and were important and I need to hear their name. 2. If I cry or get emotional if we talk about my child, I wish you knew that it isn"t because you have hurt me; the fact they have died has caused my tears. You have allowed me to cry and I thank you. Crying and emotional outbursts are healing. 3. I wish you wouldn't let my loved one die again by removing from your home her pictures, artwork, or other remembrances. 4. I will have emotional highs and lows, ups and downs. I wish you wouldn't think that if I have a good day my grief is over, or that if I have a bad day I need psychiatric counseling. 5. I wish you knew that the death of a child is different from other losses and must be viewed separately. It is the ultimate tragedy and I with you wouldn't compare it to your loss of a parent, spouse, or a pet. This one is just the worst in my eyes. 6. Being a bereaved person is not contagious, so I wish you wouldn't stay away from me. 7. I wish you knew all the crazy grief reactions that I am having are in fact very normal. Depression, anger, frustration and hopelessness and the questioning of values and beliefs are to be expected following a death. 8. I wish you wouldn't expect my grief to be over in six months. The first few years are going to be exceedingly traumatic for us. As with alcoholics, I will never be cured or a formerly bereaved but forever be recovering from my bereavement. 9. I wish you understood the physical reaction to grief. I may gain weight or lose weight, sleep all the time or not at all, develop a lot of illness and be accident prone, all of which are related to my grief. 10. Our child's birthday, the anniversary of her death, and the holiday are terrible times for us. I wish you would tell us that you are thinking about them on these days and if we get quiet and withdrawn, just know that we are thinking about them and don't try to coerce us into being cheerful. 11. I wish you wouldn't offer to take me out for a drink, or to a party; this is just a temporary crutch and the only way I can get through this grief is to experience it. I have to hurt before I can heal. 12. I wish you understood that grief changes people. I am not the same person I was before my child died and I will never be that person again. If you keep waiting for me to be back to my old self you will stay frustrated. I am a new creature with new thoughts, dreams, aspirations, and values. Please try to get to know the new me; maybe you will still like me. 13. Please don't tell us she is in a better place. As her mommy and daddy there is no better place then in our arms. We know you mean well but........

August 18, 2005 I know it has been awhile but I am in so much pain. It is a pain that gets worse with time. A pain that you would not understand unless you have been thru it yourself. I cry off and on all day long. I love her and miss her so much. I am angry and not sure what I believe in anymore. Scattered and confused. What the hell is going on in this world? Well I will summarize the funeral services and say it was beautiful….tragic as it was it was beautiful. The firemen were in uniform and carried her casket in the procession on a fire truck with 2 firemen standing guard on the back bumper of the fire truck. 4 firemen were pall-bearers while about 8 other firemen walked behind them….what an honor! They stood guard of her casket during the whole funeral from the last viewing with the family all the way until the prayers at the cemetery. How will I ever thank them? Uncle Herb was awesome when he spoke about Leah at the church and Aunt Bev wrote a poem about our angel Leah. Lindsey Pyrkosz wrote and sang a beautiful song at communion time called Leah’s journey which was centered on the idea of her having a happy heart. Lindsey what a voice you have! You should be the next American Idol and I truly mean that. Father John’s sermon brought everyone from a giggle remembering Leah’s spirit to a cry as it was very moving. The whole service was perfect. I love you Leah. I pray to Leah every night asking her to give me a sign and tell me that she is okay and that there is a heaven. Well the most significant sign we received so far was a green frog. You may say no big deal but I haven’t seen a green frog in my entire lifetime other than at the zoo. It was green as green could be and big and fat. It also had two different eyes just like Leah’s eyes were different as one was crossed. Still no big deal you say. Here is how the story goes: Our next door neighbors, Paul and Anne are like a second family to Leah. Paul was walking out of his house and there in the middle of the walkway to front door was this big green frog. He put it on the grass and called us over. I stared at this beautiful creature as it stared back at me staying very still. I thought for a second and then said, “Hold on I’ll be right back” as I darted into the house. I came back outside with a book that was written by a friend of mine about Leah. You see back in May a kind lady who I can now say is my friend offered to take pictures of Leah. She would take pictures and then write a story to coincide with the pictures and print it and then present me with a beautiful hard cover book called “Leah”. I used to read this book to Leah and she would look at it by herself as well. There is a picture of Leah inside one of the pages where she is dressed as a fairy and she is touching her wand to a stuffed green frog. Below this picture the book reads, “ Never under estimate FROGS! They really do turn into prince charmings….you just have to BELIEVE…..just ask my mommy! (ribbit….ribbit)” Well the part about you just have to BELIEVE may be what this frog is trying to tell me. I must believe that there is a heaven and that Leah is ok. Father John promised me that there would be signs and since I have never seen a green frog and we live in a subdivision I thought it was pretty weird for there to be one on our neighbors walkway. What do you think? Pretty cool eh. Well that is all …I really don’t feel like writing but thought I better write this down so that I don’t forget about it in years to come. I am sad and I go the cemetery often to talk to Leah. I just started meeting with a counselor and learned something interesting. We do not only have to go thru grief but we must get through the trauma we suffered as well. Getting thru the trauma must come first before we can start the steps of grieving. In my head are visions of that day when her tumor hemorrhaged and she was crying in pain kicking her legs. She then began profusely vomiting and I wake up at night going over and over that last day. It drives me crazy and I can’t wait until these thoughts subside and I can begin to think about the little Leah I knew before this tumor started taking over her body. Thank you to everyone that has supported us, sent a card, made a donation, called, sent meals, etc…. We couldn’t have come this far without each and every one of you. This is just the worst. Thank you for signing the guestbook and for those that came to the funeral home, or church or cemetery. WE thank you from the bottom of our hearts. God Bless us all, Karen

August 3rd, 2005 (I’m going to try to do this with 1-hour worth of sleep so bear with me if it is a bit scrambled as my heart is very heavy) As many of you already know, our beautiful precious Leah entered the gates of heaven this morning at 6:35 a.m. She was at peace next to Mommy and Daddy and we laid with her for about 3 hours hugging and kissing her. Her pain first began at home in the morning after waking up from a nap. She yelled “My head hurts!,” and then was moaning in pain kicking her legs and rolling back and forth as if a bullet went thru her head. I immediately called hospice and the Oncologist. 5 minutes later she was vomiting profusely and couldn’t get a breath in. From that point on she was out of it pretty much breathing heavily in Daddy’s arms as I drove as fast as I could to U of M where they were waiting for her. She never came to again. She did have some response the first day as they poked her and when I would talk to her I could see her breathe differently as if she was trying to talk. I did this repeatedly to ensure I wasn’t imagining it and each time she would breathe louder and you would hear a slight gurgle as if she was trying to say something. We will miss you so much Leah and we love you forever!!! I will so miss you saying everyday, “My Har happy”. May your heart be forever happy!! Leah’s mommy forever, Karen

July 23, 2005 If God leads you to it he will see you thru it. I read this on a child’s website and I thought it was very powerful and helpful for me right now. It has been one year, one year ago today we were leaving the hospital with our hopes and dreams shattered, a nightmare beginning. The worst nightmare we could have ever imagined. It’s weird how I still remember leaving work that Tuesday afternoon, weird how I cried the first time she vomited and said to Phil, “I know something is really wrong, I can just tell.” These typical instincts were very real. We have done a lot together as a family this past year and created many beautiful memories. Miss Patty’s cottage in September, then our Make a Wish trip in November at Disneyworld. In February we went to Marco Island for swimming fun, May we went up-north with friends, June California, and Chicago in July. We have met many new friends that I hope will continue to be in our lives forever. Some people chose to ignore us this past year and that is ok too. Everyone deals with these things differently, but until something tragic happens to you, you will never understand how important outside relationships are when life deals you cards like this. Speaking of handling things differently, please understand that Phil will write when he is ready to write (if ever). Phil handles these things differently and he has various ways of venting and letting it out (exercise for one). He wishes to keep his feelings private and only share with those living with him. He also states that he is happy with what I have been writing. I use this journal as a means of venting for myself and I find it very healing. Thank you for taking the time to read it each time it has been updated. Leah continues to say “My hear(t) happy” daily at least once. She has taught us so much and she is our strength. She is so swollen and is a little embarrassed when she will see people she knows for the first time since steroids began. She is able to walk, chew, swallow, speak, and laugh a lot. Her ability to urinate is getting difficult and has me so worried. I am frightened of the thought of having to cath her and hope that never happens. She is also becoming a little more tired than before and relies on an afternoon nap and sometimes an evening nap before retiring for the day. I continue to search for clothing that will fit her, elastic waists, and tent like tops and dresses. She is enjoying swimming, watching movies and playing on the computer. We are going to see American Idol Live at Joe Louis and I am a bit worried about getting her up and down the stairs there. My friend and I bought tickets months ago before she took a turn for the worse so we did not consider handicapped seating. Phil is not going with us so I cannot rely on him carrying her. If anyone has any connections to Joe Louis arena, Olympia Entertainment, Kellogg’s, or Fox News please let me know. She loves Constantine and I would love it if she could get backstage to see him. Meanwhile I will work on trying to get our seats changed or assistance in some way. Newsflash! The immunotherapy trial has been approved at Cedars Sinai so we were thrilled. There is a BUT here though like everything. The two conditions are: 1) the first 3 patients enrolled must be adults - ok, we can live with that. 2) A biopsy must be done! We were told by U of M that a biopsy in the pons would be very dangerous. I wrote my support group and everyone agreed that they were told it is extremely risky and that doctors would not do it. So …..we are left waiting to hear from Cedars Sinai to hear what they say about brain stem glioma’s that are diffused and in the pons. After this Phase I trial they may not need to do the biopsy anymore but for now that is the rule. Go figure!!! If they are willing to do it we are left with the decision of determining the weight of the risk versus the potential gain. (*&% Isn’t there anything easy in this world? Why is everything so damn complicated? Is it our wonderful FDA? Do they really want to help cure these kids? We continue on our Ruta 6C and Calcarea Phosphorica 3x along with other supplements. I have a conference call with a Dr. Incao from Colorado or Utah (can’t remember) on Monday. Dr. Incao is an anthroposophical physician that specializes in children. I am going to ask him if he believes we should try Iscador or continue on the Ruta and Calc. protocol that we are on. Dr. Incao uses homeopathic medicines along with Iscador for his patients. We are still waiting patiently for the wheelchair type stroller and I thank all of you who offered your jogging stroller to us. Thanks to everyone for your cards and phone calls. The meals have been delicious and I am staying pleasingly plump. I better go and get busy with the day. Thanks for stopping by and signing the guestbook. Enjoy your days and remember if you are contemplating something that would bring enjoyment to yourself and your family, “just do it.” Tomorrow may be too late! Love, Karen

July 20, 2005 It is a beautiful summer morning and how I love the summer mornings with the windows open (only if not too humid) and hearing the birds chirping. Beautiful! It is the day before the one year anniversary of Leah’s diagnosis. I am grateful that she is still with us but filled with anxiety about the road ahead. We had so much fun this past year and even though Leah is on steroids she is so happy. She is truly amazing. Oh, she has said this past week while pointing to her cheeks, “I wish I wasn’t on medicine because then I wouldn’t be hungry all the time.” When I explain to her that if she wasn’t on medicine she would be sleeping all the time she humbly says, “I knooow.” It is so difficult to watch your child puff up like that for it is a constant reminder of the beast inside. I love her so much. She is our little china doll…..that’s it, she is a china angel!!! Speaking of angels, thank you Carol Abney for sending us that beautiful CD with the very appropriate song on it titled “Borrowed Angels.”(Click here to play it) I am adding that song to a list of songs that I want Leah’s uncle to tape for us. I may even post the words to the song on this website for it is truly beautiful. Kylie had her first appointment with the social worker and when I picked her up she expressed her desire to visit every week and stated that she liked Ms. Leslie. That was good news. The next day we all went bowling which was Leah’s choice as she had her friend Katie spend the night. Kylie was so helpful that day with Leah and Katie. She would hold Leah’s hand all the way up to the lane and carry the ball for her and place it on the ramp where Leah would push it down. It was good family time! We were grateful to Katie for being so understanding of Leah and wanting to spend time with her. Even though it was summertime they played inside because Leah doesn’t like to get too hot. Thank you Katie! Leah loves you. Big thank you to Kylie’s godmother Cindy, for taking her on a pretty woman shopping spree and out to lunch. She had a great time and I think it was important for her to have some attention. She loves everything you bought her and said she wants to go every month, lol. Sure hope you win the lotto! Leah’s symptoms are about the same, she can walk somewhat, a little bit of drool and of course the cross eyes. The symptom that seems a little worse is her ability to urinate. She grunts and pushes every time she tries to empty her bladder and it has me a little worried. She is so puffy I am having a hard time finding clothes that fit because her belly is like she is pregnant but her shoulders are narrow. I am noticing that her legs are thickening up quite a bit as well…..my poor little pumpkin. We still continue to have good times and she still says things that amaze me. We were shopping yesterday and she had to make a bathroom stop in Parisian. We are in the stall and we had a few moments of laughter and when we finally stopped laughing she looked up at me and said, “Thanks for the laugh.” Now where did she get that from? I thought that was so darn cute. We went swimming yesterday at the swim club and received good news from the manager that Leah can now wear water wings or a life vest or any swimming device. It was policy that kids could not wear these things so I stopped to talk to a manager to see if they could make an exception. They took it to the board and one week later we received news that she could wear whatever would help her remain stable in the water. I still need to buy a jogging stroller or get that stroller for big kids thru hospice. I haven’t heard anything more about it but they are coming by the house tomorrow so I will bug. I think I will buy a jogging stroller for now – thanks for that idea Nadine. I sure would love to talk with you sometime. I’m been babbling too long but I will update again either tomorrow or Friday since it is the anniversary of the start of our own personal 911. Thanks to all who have signed the guestbook; please continue to do so for I cannot stress enough how much it helps us all. I check a couple times a day for new entries. To the mothers of angels, Rachel, Troy, and Ryan, I would love to talk with you sometime. Someone once told me, “Once you become the parent of an ill child, you become one big family of parents who have ill children.” I wish we could all meet one day and I’m sure we would talk each others ears off. Thanks again to everyone for being there. Thanks for the Monday meals! Enjoy this beautiful day! Love, Karen

July 15th, 2005 Just a quick update. Leah requested 3 times that she receive a walker. I never brought this up but she remarkably remembers a little girl that had one on her Make a Wish trip. We asked the doctor for one on Tuesday and on Wednesday she was fitted for one and we received a small one that same day. She is so proud of it and wants everyone to see her walker. We stopped at Toys R Us to buy streamers for the handlebars and a basket for the front of it. She cruises around the house now totally independent which makes her feel better about herself. She also just asked me for a bar that she has seen in handicapped bathrooms to be installed in our bathroom so that she could be more independent when duty calls. Amazing she is! Now I just need to find somewhere that has a nice looking rail or bar that is not just your ordinary chrome bar. Hospice will visit us once a week and they are going to try to get us a wheelchair that is similar to that of an umbrella stroller. She sits in a stroller now but it really is too small as her head extends above the back of the stroller and her legs are too long to sit comfortably. If they refuse to purchase this type, we will buy it ourselves. We also are having them order a larger walker that has a seat and a back support. If she wants something she gets it. I don’t care if the tab is picked up or not. I simply cannot say no to the few things that she desires. Leah’s oncologist appointment went fine and she said Leah is as good if not better than she was too weeks ago. She gained 12 lbs. so far on the steroids but they sure are helping to relieve her symptoms. What a Catch-22. Leah just told me that she wishes she did not have puffy cheeks and that they looked like they used to look. I replied by reminding her of how beautiful she is and try to say that at least twice a day. Other than that she never complains. It is amazing to me how resilient these children are in times of great distress. Yesterday I turned 47 - yikes, did I really admit that? Thank you Nancy for watching the kids for us so we could go out to dinner. We tried to enjoy it but it sure is tough to go out and not talk about our tragedy. During the day we went swimming at Herb and Kristine’s (Phil’s brother and wife) and to my surprise they made us lunch and sent us home with dinner. Thanks for a wonderful day! Well time to start my busy day. Two more appointments today. One for Leah’s energy therapy and the other is for Kylie to meet with her social worker for the first time. I think I will start Kylie once a week with the social worker and then add her meeting with a child psychologist after I conduct some interviews. I just need to find the time to interview the several names I was given from some of you. Ah – Leah just yelled out that her heart is happy. It is going to be a good day. With that note I will close and remind you to live each day to the fullest for you never know what tomorrow will bring. I mean that with all of my heart. Don’t put things off, take your family photos now, take that trip you have been talking about for months, put that pool in or that hot tub. If you can afford these things, do them now. Life is short so enjoy it. Most importantly, tell your loved ones how much you love them and how thankful you are to be your children’s Mommy or Daddy or even Grandparent. Take care y’all. Love, Karen

July 11, 2005 We are back from Chicago as of last night. We attended the American Brain Tumor Conference to learn more about this dreadful disease. I introduced myself to Dr. Keith Black and also Dr. Berger both from California hospitals. Dr. Goldman from Children’s Memorial in Chicago was there as well and we had a nice chat with him. The immunotherapy trial we’ve been waiting for just received good news from the FDA (whatever that means) and will be starting soon. There are a couple other clinical trials coming up for brain stem gliomas that need further investigation on our part. The conference gave us peace of mind knowing that we are learning and doing everything we can to ensure we are not missing something out there. The girls also visited with their Uncle Chris in Chicago and had a great time at the American Girl doll store. Thanks to Chris and Frasier for your hospitality; we had a great time. While at the resort where the conference was held we paid for Leah to have a 1 hour Reiki treatment. She was out cold and we could not wake her up. The Reiki therapist told me that she felt her angel and that it was a female angel. I excitedly said, “you felt her angel, really?” That put a warm fuzzy feeling in my heart. I also had my first hot-stone massage and to my surprise had a male masseuse. Hahaha, if you could have seen my face when Stanley opened the door and said, “are you Karen?, I’m Stanley and will be doing your massage.” It was all good. This horrible monster beast is still showing its ugly face. Leah is on steroids which alleviate some of her symptoms but new symptoms are just beginning to pop up. She is still on nutrional supplements and homeopathic remedies. She has been asking for a walker the past few days so we will run that by her oncologist tomorrow and see if it is warranted. She still doesn’t like the thought of the wheelchair so we continue to have to use the stroller. The horrible thing about this tumor is that it not only robs you of one body function but slowly overtakes every body function while your intelligence remains intact. As a parent standing by and watching your child lose the ability to walk, talk, see, chew, swallow, urinate, etc…. is devastating. Why do these kids get this? Also let me say having a child with a tumor is so much different than hearing about a grandparent or parent having this same diagnosis. Not to downplay the seriousness in an adult but come on, we are talking about a child here….not the natural order of life. Leah is such a sweetie and her spirit amazes me. Even though she looks in the mirror with only one eye and sees a puffy triple chinned child with cross eyes, she still manages to say at least once a day that her heart is happy. This morning while playing a game with Grandma James she looked over at me and said, “My heart happy”. You can barely hear the “t” in heart and it is just so cute. I question if we should have put her on steroids sometimes but hearing her say that makes it all worth it. Again Leah needs to see her friends but we fear that they will be shocked at her looks so please warn them ahead of time and tell them that she is on medicine that makes her face and tummy blow up and get very puffy. She misses all of her teachers at school and has asked if she can go in and just give them all a hug and then leave. Please keep Ryan Brown’s family in your prayers as Ryan just earned his angel wings on Sunday. www2.caringbridge.org/ky/ryanbrown Ryan has been fighting this tumor for 16 months and it started taking a turn for the worse about a month ago. God Bless Ryan and his family and please help them have the strength to get thru this difficult time. Also, Claire Tatom received her angel wings on July 2, 2005 so her family needs prayers as well. http://www.fortvillechristian.com Both of these children had brain stem gliomas. This is a deadly disease and America needs to do something to help find a cure. The government doesn’t provide a whole lot of research funding for brain tumors; it just doesn’t get the attention that breast cancer or leukemia gets. We need a cure. I need to do something about that someday. Every little bit will help. The Tumbleweed Foundation posted a paragraph about Leah needing prayers. http://www.tumbleweedfoundation.org Thanks to Mary for adding her to your website. Please stop by this website and read about the wonderful things they do in addition to learning of other children battling life-threatening diseases. We are contemplating doing a half year birthday party for Leah in August. Need to think a little more about that one. Well enjoy your days, hug your children or grandchildren for you never know what tomorrow is going to bring. Enjoy the moment and make a lot of good memories. Quality time, yes that is what life is all about. One more thing I need to share, Leah came up to me yesterday and said, “Mommy, when I was sleeping at Uncle Chris’s house I had a dream that you died and went to heaven and I would never see you again and I would miss you.” She hugged and kissed me on the lips right after saying that. Broke my heart for sure. There is a beautiful slideshow of pictures on our website and we just received the book that Lauren wrote to coincide with the pictures she took. I will treasure that book always and thank you so much Lauren Lucas for doing this for us. The book and story are beautiful and it is a hardcover book with glossy pages so it will stay in good shape for a long time to come. Leah and I read it together daily. Hi to everyone at work – miss you all (well kinda)! Kidding, I really do. Please keep the guestbook entries coming for I read them daily. I love it and it really does provide a great means of support. Thanks for stopping by and God Bless, Karen

July 4th, 2005 Well it is July 4th and it is NOT FAIR!!! How we wish it was wintertime. It would be so much easier to sit inside and play games and watch movies instead of seeing kids playing on bikes knowing our little Leah can no longer ride a bike. We had a good time Saturday as we went to a friend’s house in Irish Hills on Sand Lake. We had a blast and Leah was able to take her first jet-ski ride – she went twice. It was bitter sweet to see her on the front of the jet-ski with her cross eyes apparently looking at me and waving with a smile on her face. I was happy knowing it was her first time on a jet-ski and that without the steroids she wouldn’t have gotten this opportunity but sad because my mind wonders will it be her last??? Thanks Greg and Janine for a wonderful time that we will never forget. I got the chance to water-ski again (my favorite thing) and it was awesome!!!! Leah continues to eat a lot and is puffing up quite a bit and her symptoms are slowly getting worse. She needs help getting up from the floor, walking, going potty, getting on chairs and off of chairs, etc….you pretty much have to be by her side all day. It is hard to get anything done. I am getting behind on my thank yous because of this so please forgive me if it takes a while to receive a thank you. Both of her eyes are turned in – one more so than the other and her drooling is still there. We received a delicious meal from Jan last Monday and I want to say thank you. It is much appreciated and I understand we will be getting one meal a week from the Mom’s at Northville Christian School. Thank you to Jan for arranging this and thank you to all the Mom’s. Your support has been tremendous. We are going to Chicago tomorrow for a brain tumor conference and to visit the girls Uncle Chris so I won’t be updating again for a week. I’m not sure if we should be going but we already told the girls and they are looking forward to it soooo, tired as we are we are going. Dr. Keith Black will be at the conference and I am hoping to get a chance to speak with him and ask some questions as to when the immunotherapy trial will be available. I just want to ensure I know everything going on out there when it comes to brain tumors. A passion I never thought I would have. I talked to a doctor from Dana Farber last Friday night and we had a good conversation for about a half-hour. I really didn’t learn anything new but he did confirm the feeling I have had about this whole thing and it helped me feel more confident that I am making the right moves. They have one clinical trial that sounds interesting but we would have to live in Boston and she would have a continuous IV that needs to be changed every 48 hours. He really wouldn’t recommend it to us because the one potential danger is for the tumor to hemorrhage and if that was the case we probably wouldn’t be able to make it back to Michigan. He said he has seen kids walking and talking in the morning and then in a coma by afternoon. It is only a phase 1 trial also which means they have no clue whether it will work or what the dosage should be but has shown some promise in the lab. (as all clinical trials have) In the past 20 years they have not made any progress with this type of tumor. Something must be done to try to save all these kids. I will fight for a cure and try to help others in this same situation until the day I die – this I promise you. We will continue with our homeopathic protocol with nutrional supplements and her cranial sacral therapy, and of course prayer. One step at a time, one day at a time. Thank you for your prayers, cards, and support. I’m going to keep believing in miracles even though I know those damn odds are against us. Love, Karen

June 29, 2005 Welcome back. I have so much to say I don’t even know where to begin. All I know is that this is getting so much harder and unbelievable. Why? I held Leah’s hand in bed this morning as she always sleeps between us and I was literally begging God to save her. I angrily ask him Why Why Why ? And then I look at her and I see this horrible beast changing her abilities and her looks and it breaks my heart into little itty bitty pieces. What hurts even more is that she said to me, “Mommy, I wish I wasn’t on medicine, I think I look funny.” That breaks my heart. Parents, please tell your children that Leah is on medicine and that her eye has a boo-boo or something so that kids don’t look at her in disbelief asking why her eye is like that or she is fat. I get that when I take my older daughter places, or when we run into people that haven’t seen her in a long time. The kids don’t know any better and ask questions right in front of her. That is hurtful to us all even though the kids are innocent. Enough of that. We had a relaxing time in California last week and we stayed right in Universal City next to Universal Studios. The kids loved swimming in the pool and we visited Disneyland thanks to Jan D’Acensczo who purchased our tickets for us. Leah went on Splash Mountain and she even went on the Matterhorn. We had to use the handicapped line for all the rides so we usually got right on even though it was jam packed. We also visited Universal Studios and had a blast there as well. The Shrek 4-D movie was our favorite. Good quality family time. Thank you David Moore (from Ford Motor Co.) who so generously donated his airplane miles so that we could have a round trip ticket. You’re so kind and I’m glad to have met you. The fundraiser at Genetti’s was a huge success. There were so many people they had to turn some away for dinner and ask if they could come back after dinner or remain in the bar area. The event was magical and brought tears to my eyes for the first hour. A stretch limousine pulled up to the house to our surprise and out came two princesses who came up to our door to get Leah. They brought her a crown and held her hand as the RED CARPET was rolled out and Leah entered the limousine. I will try to put some pictures out there soon of it. It was so cute and she was so excited. Of course the poor driver had to wait a bit while Leah finished her salami. The steroids are making her eat every 15 minutes. We arrived at Genetti’s and the red carpet was rolled out again and the princesses brought her to the front of Genetti’s. I was overwhelmed again with all of the people which brought me to tears again. Some of you that were at the first fundraiser came again and I thought that was so special. Thank you to everyone that came to enjoy the evening and we hope you had fun. Thank you to everyone who so generously donated to Leah’s fund. A huge thank you to the Genetti family and staff that did such an amazing job ensuring everything went as planned. You guys are awesome and I encourage anyone who hasn’t tried Genetti’s food and theatre show to take your significant other out for an evening at Genetti’s. Lindsey Perkos, what can I say, THANK YOU for coming up with this idea for a fundraiser. Lindsey met me by us buying our shoes from Perkos shoes in Livonia. Not to sound like a commercial but this shoe store is the best which is why we have always gone there even when we lived in Dearborn. Try it and you will thank me. So, thank you to Lindsey, Nancy (you really understand and have helped me more than you know), Karen, and Anne who donated their time away from their own families to plan this great event along with Genetti’s staff. I can’t remember all of your names but Toni, Laura, and Megan thank you. The auctioneer- you were superb. Leah is gaining a lot of weight fast and is so puffy in the tummy and face. She sweats profusely every night while sleeping which they are hoping is from the steroids. It could be from the tumor but not likely. My job now is a lot of work. Medicine every 3 hours, eating every 15 minutes and potty breaks every 2-3 hours. She really needs assistance walking more than 5 steps so I need to be there all the time. The steroids also make them very moody and demanding. She always yells NOW which is so not like her. I find myself rushing to get her food NOW all the time. I sure hope Kylie understands how much work this is and why I am so busy. Well we made the dreadful call to hospice yesterday morning. I had a long conversation with a woman from Angela Hospice (my nest is best program) and she assured me that anything I sign is not binding. Hospice doesn’t mean the beginning of the end but is merely a support system for the entire family. We meet with them tomorrow evening and I am afraid and my stomach gets sick thinking about it. We can always check out of hospice at any time if we get our miracle or we just decide we don’t like it. The woman on the phone sounds like she may be a good one for Kylie to talk to as this is what she does everyday so she has a lot of experience with siblings of ill children. I’ve also done so much research on families that have walked this journey and a lot of them tell me they wish they would have brought hospice in sooner. So there you have it. This week we have had doctor’s appointments everyday except for today so we are going swimming. Thank you to all who continue to write and phone me. I actually have been feeling quite lonely lately so please don’t shy away from us because you don’t want to bother us or you are uncomfortable in knowing what to say. I’d rather be invited somewhere and we be the ones to say no rather than being ignored altogether. Yes we are busy, but on the days that we are not, a diversion away from the house is sometimes good. Keep believing in miracles and keep those prayers rushing the heavens. God Bless, Karen

June 16, 2005 My heart is heavy and I am sad but then again thankful for my lovely daughters. Leah is staying alert but she is not the same person. In a way I feel like I lost her already. The steroids are making her irritable and she is not the same sweet spirit I knew. She has major mood swings and says things that really hurt but I have to keep reminding myself that it is the drugs. It is a choice we had to make. A lethargic comatose little girl that sleeps all day waiting for the end or an irritable little girl that wants to eat a lot that will eventually not look the same. We chose the latter. I am sitting here realizing what awesome friends I have made since Leah’s diagnosis. Thank you and you all know who you are. You have really shown me what true friendship is and I write this with tears in my eyes (yes the wine glass is with me). I love you all and for everyone that has signed the guestbook – I can’t even begin to tell you how much it means to us. We love reading the messages and it gives us strength that only someone who has been thru this knows. I love the messages you leave us on the phone too so if we don’t get around to calling you back, please understand that we appreciate the call and will eventually get around to calling you. Sandy, I do want to talk to you and I did try twice to call you but you did not have an answering machine. Anne, Nancy, you have been my strength. Lindsey, Kelly Smith, Cindy, Karen Huston, Denise, Kelly Tapp, Kelly James, Kris, Lynn, Jo, Sue, Colleen, Sharon, Jan, Diane, – I know I can’t list everyone but I love you guys and think how grateful I am to have you as friends. True friend’s xoxoxox Please remember to subscribe to the website at the bottom of the page and then you do not have to keep checking it. Once you subscribe you will get a note stating the website has been updated. Also, please check out the slideshow under the photos section. I am so proud of our little pumpkin as she looks so beautiful in the pictures and she IS beautiful. Ruth Maxwell wrote a beautiful poem about Leah that will be added to the website soon if not already. Leah is on Ruta 6C and Calcarea Phos. 3x which has shown much promise in India and it is a homeopathic protocol. I had a phone consultation with Jean Wallace in Utah who was extremely knowledgeable in treating brain tumors and we ordered several nutrional supplements to complement the protocol. I also went with my friend Cindy today to the Rudolph Steiner center and decided Iscador will be my second route of treatment if the current treatment does not work. Please respect our decision to not do chemotherapy. There has not been any proven success with this tumor other than potentially buying you a couple months which might be a sick couple of months. No way in our book. We value quality of life over anything else. If there were success stories we would try it but there has not been with this type of glioma. We are going to take a break from the website and have some good quality family time now so I will update in about a week. No computer for a week. We also want everyone to know that we appreciate you coming over and wanting to visit but we ask that you please call first. We are so busy right now and we value our family time together as well as some good quality quiet time. We want to be able to enjoy our girls. If you want to help that is a different story but we ask that you please call first. We are always up for a good meal (thank you Lynn). Once again, thank you for checking on Leah and please keep praying for a miracle. May God direct us in making the right decisions and to please give us the strength we require to move ahead and wake up each morning. We love you Leah and we Love you Kylie. God Bless, Karen

June 15th, 2005 This just stinks. (I want to say more but this is a family website) I hate this so much. I have never felt anything like this before and I have never gone thru anything more difficult than what Phil, Kylie and I are going thru now. It is overwhelming. We went to U of M yesterday and I really thought Leah was going into a coma and that I would never be able to speak with her again. Her eyes kept closing all morning and she was very lethargic. Our oncologist was very surprised that she progressed so fast. We decided to put Leah on a high dose of steroids and we did 20 minutes of an IV with high dose steroids while we were there. She still wasn’t responding. About 6 hours later her eyes opened and she was able to stand if you hold her hands. Thank God. I hate steroids because they make you fat and irritable but we decided it is better to have a puffy child that has some quality of life left than a child that can only sleep. The oncologist thinks this will give us at least a couple weeks of her being able to stay awake. We were told that we should call hospice and get things set-up with them. I’m so scared. Today she asked me if she was going to die. Oh my gosh, what do you say to that. She also expressed an interest in going to the fire station in Livonia (as long as Justin is there!) so she can see where they live. I will work on setting that up soon. I was looking at Leah today and she is so beautiful and her features are so tiny, like a china doll. It is so unfair. Why isn’t there a cure? She is so looking forward to going to kindergarten and I really hope she gets that opportunity. But parts of me want to shelter her from the world so kids don’t stare at her. We are wishing it would rain everyday so that Leah doesn’t see the fun things outside that she can no longer do. NOT FAIR!!! On a hopeful note – I had the correct dosage of calcarea phos. this is taken along with the Ruta 6 Federal Expressed to us today. I’m hoping this will kill that monster. Our alternative doctor worked on Leah’s cranium yesterday afternoon and Phil and I are starting a 9 day novena to Our Lady of Fatima. We will pray the rosary every night in front of this statue. The statue came from Portugal and our friend Janine (thanks Janine) is letting us have it in our household until Leah has healed. Kylie’s birthday is Monday so we will try to make it special for her. See some of you at the fundraiser. Lindsey, Nancy, Karen, and Anne, thanks for all the hard work you have put into it. I am amazed at how many items you received for auction. Those that are curious, we have autographed Red Wing jerseys, Payton Manning signed football jersey, chefs dinners at your home, jewelry, restaurants, hotels, and more. Thanks for stopping by to check in and for your prayers. Leah is alert so your prayers must have worked. God Bless us all. Please keep Phil and Kylie in your prayers too. My husband is really having a hard time since yesterday. We all need strength to get thru this battle. I don’t like to lose and damn it I’m not ready to give in. Blessings, Karen

June 13, 2005 Prayers are needed. Leah is worse again and cannot walk. She is very tired and keeps wanting to sleep. Oh God….I hate this and I hate tumors!!! I am very tired but wanted to give you a quick update. She was removed from the steroids a couple days ago and I have a feeling we will be putting her back on them tomorrow. We have an appointment at U of M tomorrow morning with the oncologist and I’m quite sure she will recommend the steroids. Get the Doritos ready. Leah’s right eye is turned in as I said before and her left eye is wanting to do the same thing. It rolls back and forth so it is sometimes difficult to tell what she is looking at. It is also difficult to understand what she is saying. It was so sad, yesterday she tried to swing on the swing and her left hand would not open to hold the chain so she tried to hold it with her wrist. Of course she fell and as a Mother I just feel so darn helpless. I so want to help her and am trying everything in my power to save her. These gliomas are monsters and I’m very angry. After the oncologist we will have lunch and then go to the alternative cancer treatment doctor for cranial sacral therapy and discuss next steps. I will let you know what happens. If you haven’t called to attend the fundraiser and plan on coming, please call so they know how many chairs, food, tables are needed. As far as California on Saturday, we will have to see what the oncologist says. I went out and bought a new stroller so it will not be easy but it will be good for the girls if we can go. I love you Leah forever and ever. Karen

June 9th, 2005 Sorry I didn’t update sooner but I am exhausted. Mental stress is the worst and I feel so tired at night I could just crash. I know more about brain tumors and cancer than I ever wanted to know. On top of that it has been a busy week and next week will be even busier. I went to a new alternative medicine doctor in Ann Arbor that was recommended. My friend Cindy went with Leah and I and we were there for 3 hours! He was very impressed with the research I did and loved the articles I found. We decided for now we would start on the Ruta 6 along with the Calc. phos. along with some other nutritional supplements to detoxify and boost the immune system. This doctor was a very interesting man and I found out he knows of a doctor that I had been waiting to hear back from that I wrote back last year that is brilliant but no longer practicing in the US. Can’t say who he is but Trina you recommended him. He was going to call him along with Jean Wallace in Utah and the man in charge of PolyMVA. This new doctor performed Cranial Sacral Therapy on Leah and she fell asleep. I am going back on Friday for more education and more cranial therapy. A little bit of hope here. After Ann Arbor we will head to West Bloomfield for Leah’s rife treatment. Busy day. Father John (St. Stanislaus) came by Tuesday night and blessed Leah with healing oil from St. Raphael. He also brought a relic from Father Seelos (crucifix that was touched by him) and we are allowed to keep it in our house. We were blessed to have Fr. John stay and play with Leah and Kylie for 3 + hours. Thank you Fr. John. Our girls think the world of you! Leah is still the same. The right eye is buried in the inner corner and she has a bad limp. She said her left side just isn’t working right. She also mentioned to me that everyone is staring at her which just broke my heart. She is still in good spirits and every day at least once a day says “My heart's happy.” We won tickets to go see Dora the Explorer thru the Livonia Observer so I did it up right and rented a white limo for us. The limo was a surprise and if you could have seen her face when she saw it parked out front. Trouble is, she asked me how many days we could keep it? Too funny. We had a good time. Leah also had her pre-school graduation this past week. What a tear-jerker. They played that graduation march (daaaa-da-da-da-da-da, da-da-da-da-daaaaa) as I stood there waiting for Leah’s name to get called I couldn’t help but feel it is all so unfair. I saw all these healthy kids and there was my little Leah, looking at me cross-eyed with a big smile on her face waving at me. They called her name and she walked up the slide, slid down and received her diploma at the bottom of the slide. She was so proud and everyone clapped when she got to the bottom. I stood there full of tears as I wondered to myself, will this be the only graduation she ever gets to experience. God I love her. Next week we see Leah’s oncologist so I will see what she says about these latest symptoms. She is such a trooper and never quits. Even though she falls, she gets back up and keeps going. Even though people stare at her, she is not afraid to go out there and stare back. She just wants to be like every other child and it is just not completely working for her anymore. She can’t peddle her bike anymore, or keep up with the other kids while running. Why do these things happen to innocent children? I will never understand. Yeah, I know God has his plans for us all and blah, blah, blah. It doesn’t make it any easier to go thru. We were in the Detroit News last Wednesday, Neighborhood News section in Plymouth, Canton, Northville and Northville Township. Cute article about how Northville rallies around little girl. They also gave our upcoming fundraiser some good publicity. Thanks to everyone for dropping in and for those that signed the guestbook. Please continue to pray, pray, pray. God Bless. Karen

June 6th, 2005 Wow, where do I begin. Leah took a turn for the worse Memorial Day Weekend as her symptoms became more severe. Her right eye is buried into the corner and does not move. Her right eye cannot blink so I have to put drops in 3 x a day along with gel 2 x a day because her cornea gets irritated. Her left side has partial paralysis so she limps very badly now and her left arm just kind of hangs there. It is so hard to see your child like this. To watch them suffer tears your heart into shreds bit by bit. To watch other people stare at her, children to stare at her and wonder “what is wrong?” makes you appreciate what parents of handicapped children must go thru. It just plain hurts so badly. Thinking perhaps that the Accutane may have caused some swelling as she became worse after 7 days of treatment we took her off of it. I also stopped the PolyMVA for now until I consult with an MD in alternative cancer therapy. We still receive emails about trying different doctors in conventional medicine and I can tell you we have tried all of the best. I know you are just trying to help but we have contacted Dr. Keith Black, Dr. Teo, Dr. Ben Carson, Dr. Abbott along with about 6-8 others. There is nothing else conventionally that can be offered. Chemotherapy may give us a couple extra months but do I want her quality of life to go down for a couple of months? The answer is NO. I want her to be able to do everything she loves doing and I don’t want her vomiting and sick. She will continue her homeopathic medicines along with Rife therapy until we meet with a doctor that specializes in alternative cancer treatments. We meet with him Tuesday and I already talked with him on the phone and discussed with him about a case where there was complete remission of this type of tumor in Germany. This doctor works with German doctors a lot and we are eager to meet with him. I will let you know what happens. Fr. John is coming out again tomorrow night to anoint Leah with healing oil from St. Raphael. Leah also receives her diploma from pre-school tomorrow morning so it will be a busy day. Graduation, alternative doctor and then Fr. John. The days are starting to fill up like that. Good news – Leah’s pre-school and child care center is going to stay open and not be replaced by a cancer center. She attends St. Mary Mercy Child Care Center and it is wonderful!!! It would have been such a loss to the community to see it replaced so we are happy they are here to stay. Good decision by the hospital is all I can say. I started my FMLA today and I figure I will do my best to try and find some alternative treatment for Leah that offers some hope and I need to get Kylie in some therapy. I am looking for a good Christian therapist for Kylie to meet with that is not too far away. I have a couple names of good therapists but I’m wondering if they are Christians and I would like it to be a female. Once I have the girls on their way (fingers crossed) to recovery, I may then have time for myself to go to a therapist and see what they say. Perhaps I should be on medical leave as I am a basket case at best but I really don’t have time for me now. I think I filled this with too much information so far so I will stop. Please sign the guestbook if you haven’t already. There will be an article on Leah in the Detroit News neighborhood section on Wednesday of this week. Please look for it and save the article for me if you will. Also, if you are attending the fundraiser and haven’t already called in your reservations please do so. They need to know how many to set-up for and how much food to cook. There will be lots of cool items, autographed sports stuff (hockey, football and maybe basketball) and there is even something coming from Hollywood. Please continue to pray for us and especially Leah. Thank you to everyone that has been there for us. I love you all and you know who you are. God Bless, Karen

May 30, 2005 Oh my gosh! How do I (we) accept the fact that our child is going to die? I can’t – it doesn’t seem real. She is so beautiful and precious. She never gives up and never complains. She is truly amazing. I love her so much. Leah is taking accutane and Polymva. She has a limp as her left leg drags and she is drooling from the left side of her mouth. Her eyes appear more crossed and it so breaks my heart. It is getting ripped into shreds little by little. We have an appointment at the Rudolf Steiner Health Center run by Anthroposophical doctors in a couple weeks. They use Iscador there and you can even stay there for 2 weeks at a time. Alternative treatments are the only things left and we are going to try everything we can think of. The immunotherapy trial is still several months away and we feel so darn helpless. I hate Cancer!!! I hate it!! Nothing is as bad as having your child terminally ill. I can’t relate to other stories unless they are about a child. It is difficult to be happy for anyone right now or be excited for someone’s first tooth. Will I ever be happy again? I think not. Whatever decision we make we need to be able to live with. I still have thoughts of Dr. Burzynski and wonder how many children did not make it. I need to know the odds. I wish I knew someone that could help me through this. It is not getting easier. Kylie is starting to have crying fits that I believe are stemmed from what we are going thru. She will always blame it on the puppy she can’t have, or the sleepover she is not allowed to have tonight but she cries and clings on to me hysterically. It is going to be a tough year!!! I also believe I will be taking an unpaid leave very soon. Thank you to all that have remembered us. Thanks for stopping by and signing our guestbook. Thank you to Dave for offering us your World Perks miles so we could have a free ticket to California. It was very generous of you. Phil has to go to a class in LA for 4 days so we thought we could take advantage and go with him to create some more great memories. Please don’t forget that if you want to know when this website is updated you can subscribe to it at the bottom of the webpage. Also, if you plan on attending the fundraiser, please call and make reservations. Genetti’s needs to know how much food to make and how many people to arrange seating for. Thanks for your prayers. God Bless, Karen

May 24, 2005 Hi everyone, A quick update – we went to the oncologist today and she had tears in her eyes as she checked Leah. It was a bummer of a day as I tried to hold back the tears to show strength for Leah. I was bummed all day until 4:00 and then it hit me. NO! We are not going down without a good fight. We are going to fight this tumor to the bitter end. Those that know me well know that I do not like to lose without a good fight. I got on the phone and ordered 2 months worth of PolyMVA; yes it’s expensive. We are also going to start Leah on Accutane which is a prescription from the oncologist. The only side effect to Accutane is dry skin and chapped lips. We can live with that. Oh it has its warnings which happen in only a small percentage of people (15%). The time has come for us to do something else so we are hoping these two additions will stabilize the tumor and buy us more time if not completely go away. We are also going to get the laying on of the hands again on Sunday from Father Vogan at St. Genevieve. Our oncologist called Cedars Sinai and they said they are still 6 months away from getting FDA approval for the immunotherapy. That is what they told me last time! How does one carry a cross like this? I look around and see kids running, laughing, families happy and I feel like the world is going on and ours stopped. I will take it day by day, perhaps hour by hour. All of your support means the world to us and we thank you again. Aunt Rose, I’m going to quote you again for what you said to us was the best thought ever. “Whatever decision you make as parents of Leah is the right one.” For those that are going to attend the fundraiser, please get your reservations in. There are going to be some cool things there for auction and if you are not into that you will at least have a good meal amongst good company. Please see the web-site under fundraiser for more information. Also, be sure to check out Leah’s quilt which was made for her. You will find this at the bottom of the update; just click on the link. Thanks again and please keep praying for us. Love to all. Karen

May 18th, 2005 Sometimes life just plain sucks. Not to offend anyone but it sucks. I just talked to Leah’s oncologist and her MRI is showing slight tumor growth. The whole area is a little plumper, however the ventricles still look good meaning they’re not crunched. What to do now? The only other conventional choice is chemotherapy or Accutane, not that we have to go with conventional? I’m going to research Accutane and see what it is all about. We have an appointment with the oncologist Tuesday as we had to cancel the appt. with her today. Leah was way too groggy and wobbly as they had to give her two medicines to get her to go to sleep. She is still stumbling around like she is drunk. We don’t know how fast or slow growing it is; she doesn’t think her’s appears to be fast but too early to say. What would happen first? The left arm and left leg would be affected first and so far her arm is fine and she is still able to walk fine. Her left leg walks heavy as her foot doesn’t bend like it used to but she gets by. We’re also going to tell the holistic center what they found and see if we can beef up treatments by going more frequently or try something else by IV. Iscador??? I will start writing some other holistic centers around the US and see what I can find. I need to go cry some more so I’m going to go for now. I’ll be updating next week after we get some sort of gut feeling as to what we should do. Thanks for all of your prayers and support. Please pray for a miracle. Much love, Karen

May 15th, 2005 Ah, it’s Sunday and we just came back from a wonderful day at “A Day of Beauty” hosted by Allie’s Angels. What a wonderful event and organization. Leah was one of about 42 that were treated to a manicure, pedicure, haircut, style and a gift bag. Big sister, Kylie, donated 10 inches of hair to Locks for Love during this event so she was treated to the same luxuries. They had a blast and we took many pictures. Thanks to Allie’s Angels!! What a supportive group of people. Saturday we went to Canton’s Relay for life which we were invited to as Leah is a Cancer survivor. Whether you were diagnosed 1 hour ago or 20 years ago they invite you to walk with them in a parade and everyone claps as you walk by. Of course the shirt Leah was given was down to her calves and she had on her high tops and her 2 ponytails and looked cute as a button. Every time people would start clapping and cheering I would begin to cry so my sunglasses were left on the whole time. Two supportive days to honor those with serious illnesses. All in all, a good weekend but busy. Leah’s next MRI is Wednesday so please, please stop and say a prayer that we get good news. She is scheduled for 9:20 a.m. Wednesday morning. After the MRI we will see her oncologist and then at 1:15 on to the ophthalmologist. Talk about a busy day off! I will try to send a quick, (promise it’ll be quick) update on Wednesday night or Thursday morning as soon as we hear results. Leah is in great spirits and at least every other day says her heart is happy. It’s the little things like lying in bed next to us or eating dinner together where she says, “Mommy, my heart is happy.” If only we all had a happy heart so often. We were a little nervous last week as I noticed Leah drooling from the left side of her mouth then on Friday the drooling stopped and I noticed tears coming from the left eye quite frequently. After her Friday night visit for her holistic treatments, she appeared much better. No more drooling or tears. I was so scared last week and now I feel good again. Perhaps all of this holistic medicine and therapy is working. Not to mention the many prayers that are being sent up to the heavens daily. For those that are coming to the fundraiser, please make your reservations early so we have an idea as to how many are coming. Please call Genetti’s to make the reservations. It should be a fun night for sure. Thanks to everyone for stopping in to read about our beautiful Leah and please keep the prayers and notes coming. We need you all. Check out the 3 new pictures on the last page of the girls with their newly adopted babies from Lee Middleton at Parisian. Thank you Brownie Troop 298 and Parisian. Much love, Karen

May 4, 2005 Hi all. Just a quick update on a few things. Leah is happy and doing fine. On Sunday, thanks to Brownie troop 298 from Canton, along with Parisian, Leah and Kylie enjoyed a fun day at Libby Lu and then on to adopt their very own Lee Middleton baby. It was great fun and the best part was that as soon as we walked into Parisian, we sat down to get a coffee and Leah said her heart was happy!!! The girls had so much fun and I will try to get some pictures out on this site soon showing them with their new babies. We thank God for everyday. Leah and Kylie came to work with their Mom last Thursday for “Take your child to work day.” This was the first time Leah ever saw my office and she loved it. She kept saying she wanted to come to work with me everyday. I would never get anything done!! I’m glad Ford allowed them to share this day with me as they are in full support of this event and offer many activities for children to participate in throughout the entire day. We pushed a cart around for one hour and sold Teddy Bears, bracelets and pins for the Juvenile Diabetes foundation which made them feel so important. Remember last week I sent out Leah’s MRI’s to 2 more neurologists and sent a note to a holistic doctor in Colorado that specializes in childrens medicine. So far we have heard from one Neurosurgeon, Dr. Scott out of Boston and he just confirmed what everyone has been saying. It is a diffused pontine glioma and there have not been any clinical trials (chemotherapy) that have had any success. It never gets easier hearing that. Yes we have contacted about 10 doctors but I just keep thinking maybe there is someone out there that will find it is something else. I couldn’t live with myself if I didn’t try every well known doctor out there; Every doctor that has had miraculous stories that we have heard about. Peace of mind is a lot right now. The fundraiser date has changed and has been finalized. It will be June 17th (Friday night) at 6:00 at Genetti’s in Northville. The event will include Genetti’s famous 7 course dinner, live and silent auction (awesome stuff) along with a 50/50 raffle. Beer and wine are included in the ticket price of $40.00. If you are interested in attending (would love to see you all there) please call 248-349-0522. If you can’t make it but would like to donate an item for the silent or live auction, please contact the same number or email me at PKKL916@hotmail.com. (Please see flyer down below.) Mothers Day is coming and I’m going to enjoy every minute of it. The weather is supposed to be great! To all of the Mom’s out there – Happy Mothers Day! Once a Mom, always a Mom no matter what!! Enjoy your children and hug them tight and enjoy every inch of them and every minute of everyday. Happy Birthday to Phil, my adorable husband. Honey I love you. Thanks to all that took the time to check in on Leah and write messages in the guestbook. It means so much to us….I know I keep saying that but it really does!!! Thank you for caring and showing your concern and support. This road really stinks. Praying for a miracle daily! God Bless, Karen

April 30, 2005 Hello all. Leah is doing well. Only symptoms are the eye and now I noticed that she cannot walk on her heels with both legs. Her left leg doesn’t seem to let her do this. When we see the oncologist she always asks her to walk on her toes and then on her heels so I try to repeat this exercise at least weekly. Other than that, doing great. She runs around outside with her sister as if there was nothing wrong. She keeps saying she wants to go back to Florida though….hahahaha, can’t blame her!!! We added some more homeopathic medicines to her treatment and will be adding even more next week. Pretty soon I’m going to need all day just to give her medicines. We sent her MRI’s to Dr. Abbot in NY and Dr. Scott in Boston so waiting to hear from them next week. Also I sent a note to a very well known M.D. that specializes in Homeopathic medicine for children in Colorado. We need the peace of mind to know we are doing everything humanly possible for Leah. We went to see the Lady of Fatima statue last Friday and she was beautiful. The girls and I knelt down in front of her and prayed; I could not stop staring at her beautiful glistening eyes. Beautiful! We also prayed with Mother Marie at Little Rose Chapel; Mother Marie runs the chapel and knew Little Rose. (Little Rose is on the list to become a saint) We bless the girls every night with water from Lourdes after saying our nightly prayers. Leah and Kylie love their new swing set. The girls are going on Sunday to adopt their Lee Middleton doll and have some fun at Libby Lu (compliments of Brownie Troop 298 and Parisian). We are excited about that and will tape the entire event. Kylie is doing fine and enjoying her sister. Life goes on and the anxiety builds as the next MRI is May 18th. Prayers are needed for this day please. Let’s flood heavens doors with our prayers. Thank you to all of you for your cards, donations, and kind words. Denise – thank you!!! Bruce and Carol – thank you! Please keep Leah’s other friends with the same illness in your prayers, Kaidre, Cameron, and Dylan. They are all battling this same tumor. All of your support always means so much as this is the only way I think we are getting through. We read the guestbook entry daily and please know that your words help more than you can even imagine. I can’t imagine going through this without this web-site or guestbook entries. I love you all. Most of all we love you Leah. We love you – love you – love you. Fundraiser – Genetti’s in Northville on June 10th . There will be an auction, drinks, and food. More to follow. God Bless, Karen

April 22, 2005 Well they say what doesn’t kill you makes you stronger. I’ve been saying that to myself lately as it has been a tough week. I won’t get into the whys but just know it has been just overwhelming and this time it didn’t even have to do with Leah. Of course the stress with Leah is always there. I feel like I am carrying this huge cross and any other stresses in my life make me fall down. Some say we are strong, but I’m no stronger than you. You just do what you have to do. I don’t deal the cards; I just play them best I can. Leah is doing well and is loving school. We just bought her a new swing set that is much larger than her last one. I wanted her to have something to play on outside and didn’t want her feeling bad about her sister going on the trampoline. The new rule is that if anyone goes on the trampoline, there always has to be at least one person playing with Leah outside of the trampoline. She is happy. What an angel! I think I may notice a slight difference in her eyesight and smile but I don’t want to dwell on it as it could be from the radiation too. Is it the tumor or the effects of the radiation??? Leah had her pictures taken Monday by a dear lady that read her article in the paper. She took lots of great shots and will then write a story about the pictures, and turn it into a book. I saw the books from other children and they are beautiful. That was exciting. Thank you Lauren. Also, a Brownie Troop in Canton, #298 did such a kind thing. They provided us with a gift certificate for the girls to adopt Lee Middleton dolls. Both Kylie and Leah will get one and Parisian was kind enough to throw in a visit at Libby Lu for both girls prior to adopting their babies. Thank you Troop 298; we will tape the entire event for you. Thank you also Parisian. Your generosity is so much appreciated. I’m sorry Leah was so shy when you came over to visit. She doesn’t like people knowing she has an illness or having people watch her take her medicines so she has become even shyer. We are going to a church tonight to see a statue of our Lady of Fatima which has shed real tears. We are going as a family and we will pray in front of this blessed statue. Tomorrow, off to Little Rose Chapel where we will pray with Mother Antille. Not sure if I spelled that right? Leah is on even more homeopathic medicines so we are doing everything we know of that could potentially help her. Still waiting to hear from Cedars Sinai about the clinical trial. We are sending her MRI’s to Dr. Abbott and another Doctor in Boston for peace of mind. Kylie is doing fine and enjoys playing with her sister more than ever. They have gotten very close. There will be another fundraiser on June 10 at Genetti’s (approx. 7:00 p.m.) in Northville on Main Street. That is all I know about it for now but more to follow. Thanks for listening once again. Keep those prayers going please. Next MRI is Mid-May so many prayers are needed.

April 9, 2005 I can’t sleep again so here I am. In July 2004 most doctors said Leah would have a 1% - 5% chance of living past one year. As the months pass I grow more frightened. Oh my gosh, what are we going to do if that ugly monster in her head starts growing. I notice the crooked smile and her lazy eye and it always reminds me “it is there”. I want you to really ask yourself, how you would feel if you were told statistically your child only had another few months. Take a minute, think about it. Ok, did you really think about it? It is horrifying and it is constantly on our minds. That fills up most of our thoughts and then of course we are left having to still continue doing a good job at work so now what room does that leave in our minds. Room for nothing extra. Because of this we are asking for forgiveness for our forgetfulness. We have missed doctor’s appointments for ourselves and even one for Leah, and other appointments at schools and such. It is getting more difficult as days go by. One minute I’m feeling like “I’m going to kick some butt on this cancer” and the next minute I am feeling lost and alone and asking why her? Sleeping pills of some kind are more the norm these days which leaves you feeling groggy in the morning. We are searching for spiritual guidance right now and have found some comfort in Northridge Church. Beautiful place. Of course we are thankful for friends, and family that have wrapped their arms around us. Our children’s schools which have been wonderful to say the least. Thanks to all who wrote us after reading the article about Leah in the Observer and to the Zawacki family for making those beautiful blankets, and to those that sent stickers and cards. Thanks to our work places for being so supportive and understanding. And thanks to anyone that has included Leah on your prayer list. I probably sound like a broken record but it all means so much and I’m so sorry if we haven’t gotten around to thanking everyone personally yet. We just had a nice day yesterday. Leah and I stopped at her favorite restaurant, Charlie’s Grill for a snack and to say Hi to the wonderful owners. We then went to her big sisters school to take a kindergarten screening test and she was so excited. Her face lit-up as we stood in the hallway and I point to the room she would be in. She asked excitedly, “Are they coloring?” She was very excited to see it and to think about going there. God please give her the opportunity to go to kindergarten. We then went to pick out a new swing-set for the girls to play on and Kylie was able to join us as she had a half day. We have a trampoline and Leah is not allowed on it so we knew the answer was a new swing set. I’m hoping it will come soon. We then went to Lifetime Fitness for indoor swimming and then on to a doctors appointment for Leah. All in all a good day. Our house was being painted inside at the same time so my dear friend Lynn offered to take the girls overnight so that they wouldn’t have to smell the fumes. Our house feels so empty without them here but I know they are having a ball. Of course now we will have to hear about how they wish they had an upstairs. Still waiting to hear from Cedars Sinai in CA. Also, an Observer reader wrote us and recommended a Neurosurgeon out of Boston. I wrote him an email and he basically told us what we already know although he did think it was wise to wait for the immunology trial and also stated that his hospital in Boston would be doing one as well in about 6 months. I think we will send Leah’s MRI to Boston so that we can get on their waiting list as well. Leah also started an additional medicine and we are increasing the amount of medicines she is currently taking. Doing everything we can. Kylie and Leah are really enjoying each other these days. Leah loves her big sister. We love you Leah, our precious little angel. xo

April 3, 2005 Well it has been about a month since I’ve written an update. Work has been so busy my mind hasn’t had much time to think about anything else. I guess I’ve been pretty depressed lately and feeling sluggish. Leah is doing fine. We continue to take her to the holistic center and she is on a few more homeopathic medicines which she has been agreeing to take. She trusts the person that is guiding us and that is so important. She is happy, smiling, playing, and going to school. We pray everyday for a miracle. I also pray to the blessed Mother for helping me to be a good Mother. I think about the pain she must have felt watching Jesus carry the cross and I ask for her strength. We took her to a pediatric opthamologist a couple weeks ago because her left eye has been lazy. She told us the optic nerve did not have any damage (yay) and that the left eye was compensating for the right eye. When she tried to look to the right while her head was being held to the left she could not. Her right eye will not bury itself into the right corner so the left eye is always compensating for it. For now we will let her just turn her head to see right and if it gets worse, the opthamologist can perform surgery. We will see the eye doctor every two months now. Leah continues to amaze me. The other morning she was eating her breakfast and we were listening to the radio. A song called “How Far is Heaven” came on and Leah yelled, “turn it up, this is my favorite song”. That was news to me but I found it interesting being that it had a title about heaven. She is fascinated with heaven I think; she said to me the other day in the car, “Mom, I can see heaven up there, it’s up there past the clouds.” I still say she is an angel. Today we went to the mall so I could show Leah the Lee Middleton dolls in the nursery at Parisian and while we were shopping she said, “Mommy, my heart is happy because I love being with you.” I told her that if her heart is happy, mine is happy :) We just have too many people to thank which is a good thing. Thank you to everyone who sent a card, note, gift, made a phone call, had the girls over your house, etc… Thanks Denise, Nancy, Aunt Kelly, Carol, Lindsey, Debbie, Gina Agosta Hair Salon, South Lyon Royal Rangers and oh my gosh, I could go on and on. Things are definitely much quieter now so we are just enjoying our times together. This weekend was simply family nights where we watched movies or played games. I want to do as many things as the girls want to do. We asked them both that if they could spend all of the money in their piggy banks what 5 things would they spend it on. This helps me to see if there is anything else I can do for her to make her smile. The immunology trial that I am waiting for has been delayed again as they just submitted to the FDA for a third time. The first two times they submitted to the FDA they asked for them to change some things and resubmit proposal. I also hear that there are more people on the waiting list than there are openings. Sure hope we get into this one which will be at Cedars Sinai. Another fundraiser may be coming soon; it will be a small one but will give those that did not get an opportunity to attend the others to come. More to follow on that but it will probably be at Genetti’s in Northville. Well I’m off to make dinner so thanks to everyone for reading this website and showing your support. Please continue to pray for lovely Leah. We will be in touch soon.

March 12, 2005 Well I don’t have much to update you on. We have added essiac tea to Leah’s list of herbal supplements and vitamins. I pray to God they are working. She is doing well and looks great. She’s walking longer distances now and doesn’t complain as often of her knees hurting. She’s a little slow at climbing stairs but that may be her just being cautious as we have a ranch so she is not on stairs much. Only symptoms she is having, lazy eye sometimes, and crooked smile-only sometimes. Thank you all for praying for her and showing your support to us thru the guestbook and those few that write letters. It is so refreshing to receive an uplifting letter or email. We love it so please keep them coming. Leah still uses the phrase I have a happy heart or my heart feels happy. I just love that!! The other day I had to correct her for something she did and my voice was a bit loud and angry. She said, “you broke my heart” as she was crying frantically. I thought that was just the cutest thing and wanted to share it. Of course, I felt horrible but at the same time it was cute. Our crocheted angels are hanging on an Easter tree (normally used for Easter eggs) and they look so beautiful. Thank you Angels for hope. Aunt Kelly ,Uncle Marc, Alex, Janina, Adam, and Josh, thank you for making Leah’s heart happy. We love you all. Kylie is having a little bit of a tough time as you can imagine stating Leah gets too much attention. We are trying to even it out a bit but it is difficult. As for me, well life has been tough for sure. Carrying this heavy weight around all the time and having to go through the normal trials and tribulations of life. You can only imagine what happened to me on “raise” day at work. At least I got one! Some best friends left our lives for good at that has been tough as well. Interesting what happens when your child is diagnosed with a terminal illness. Some people choose to run away. On the bright side, some old friends have now come back into our lives, and some new friends have entered our lives which now leads to a wonderful group of friends. We now understand what true friendship is all about on our end. We have two beautiful girls that we get to spend another day in this life and right now they are not handicapped in any way. We both have jobs helping us keep some quality of life so all in all, life is good. Thanks for your prayers and please continue to pray because I know they are working!! Next MRI scheduled for mid-May. We may get chosen to enroll Leah in the immunotherapy clinical trial in California but we won’t find out for a few months. WE love you Leah.

March 7, 2005 Boy this is not getting any easier. On the way to school this morning Leah said, “Mommy I had a dream last night that I died.” As I started to say, “Oh we would be sad” she then said “but I came back and you were still the same age and I was just sleeping.” She then said that she is afraid her tumor will grow back. This tells me this little girl is thinking about things quite a bit and it just breaks my heart. Thus, I placed my sunglasses on even though it was rainy and a bit dark. Just long enough for me to gain my strength to walk her into school and pretend everything is normal. Anti-depressants are sounding pretty good right now. Not sure if I should continue to try to stick this out or try going on something that will not have as big of a withdrawal. I think it is good to feel and not try to mask sadness but then again, I don’t know how much longer I can go on with all of this sadness inside. What to do? We’re trying to decide if we should go to Fatima and Lourdes. Can Leah handle such a long trip or would it be just too exhausting for her. We have mixed feelings. Is God going to only give the kids attention that go to Fatima and Lourdes….that just wouldn’t seem fair. If a miracle is going to happen, can’t it happen anywhere? More decisions to make. Still waiting for a call from Cedars Sinai to let us know when the clinical trial for immunotherapy will be started. I found a very educated surgeon (not a neurosurgeon) that also studies alternative medicine and has a great passion for it. He is going to review the trial with me and give me advice as to whether he thinks it has potential. We will have two M.D.’s who also practice holistic medicine review it and give us their opinion. Leah is having a great time everyday. She is really enjoying her sister these days and of course her Mom and Dad. Her heart feels happy at least 1x per day. She is such a joy. Her eye is lazier than usual I think but her vision is still perfect. How do I know? I keep close watch of her coloring and it is still almost perfect. She can still color the tiniest little objects and remain in the lines. Better than me for sure. I love you Leah so much and I hope you continue to have great times and grow healthier with each and every day.

March 3, 2005 Just wanted to share with you something that Leah has been saying from time to time that just melts my heart. Within the last month she started saying occasionally, “My heart feels happy.” She says this while having a huge smile on her face. She said this on the way home from the airport after our recent trip because she was excited to see her cat, Batman. She said it when she was opening up all of the crocheted angels from “Angels for Hope” that she received. Whenever we are together doing something simple she will say these words. Awww, she is so precious. What a cute way of explaining how you are feeling! Some of you say to me, “you are so strong, I don’t know how you do it.” Well, the bottom line is I am just like you; we are just like you. We love our daughters with all of our heart, and when you are faced with something like this you just live day by day and do what you have to do. You ALL would be able to do the same thing if this was thrown at you. You would have to. Also, Leah is in school because she wants to be in school. We needed to give her a sense of normalcy again and going to school everyday, hectic as our mornings are, is just what she requires. So please, no more questions as to why she is in school and I am working. Living life as she knows it is what is best for her right now. I noticed her eye being a bit lazier than usual today so I did the typical eye test that the oncologist does. I noticed her pupils do not bury themselves into the corners of her eyes on one particular side of her face. I move my fingers in front of her eyes and tell her not to move her head but simply follow my finger with her eyes. She can see the finger on one side of her head but not on the other. Her vision is good though and her coloring is still phenomenal. The eye thing bummed me out and reminded me of this monster that is inside of her little head. We are scared. Keep the faith I know, but we are scared. We’re hoping Dr. Keith Black starts his trial soon and we can learn more about it and possibly put Leah in it. I don’t think it would have many side effects and we may just hit a home run. So there you have it. I need something to look forward to again and wondering what that could be this time. Helps get thru the anxiety. Her next MRI is scheduled for mid-May. Until then, please keep praying and we will keep pursuing and researching alternative treatments and the immunotherapy option. Thanks for checking in on us. I love you Leah!!!

February 24, 2005 Well it has been quite a while since I sent an update so this one may be longer than usual. Leah’s oncologist just called with the MRI results. Her tumor is stable and NOT showing any enhancements. It is the same size as last scan where it had shrunk slightly from diagnosis. This is typical in kids that seem to be the longer-term survivors; the tumor shrinks just slightly and then remains stable. So far so good. I also just received a note from Cedars Sinai hospital and they stated that Leah would be a potential candidate for the Brain Stem Glioma “Immunotherapy” trial when it begins. I’m not sure if they would have to wait until her tumor showed signs of enlarging or if they would start it ASAP. Also, we need to find out more about the side effects with this trial before saying for sure if we would go with it. I will try to find out next week when we see the oncologist at U of M. I will also have to see if the medicine could be administered here or if we would have to go to California. How are we going to do that with Kylie’s school and all, I guess we will figure it out when the time comes and I kinda hope that time doesn’t ever come if you know what I mean. Phil went to Fr. Solanus tomb yesterday to pray and left a picture of Leah with a note on it. Since he did this I placed a Fr. Solanus Casey scapular on Leah before she went into the MRI room today. Phil plans on going every week to pray to Fr. Solananus since it is near his work. Another cool thing that happened today. Leah received 16 envelopes in the mail today, large manila envelopes from different states. Each envelope contained a crocheted angel or butterfly from the Angels for Hope group. It was so fun and wonderful to know that so many people are praying for Leah. Thank you to whomever it was that requested these Angels be sent to us. It was so fun for Leah to pull each one out, one at a time, all being a different color or size. Some of you are still remembering us with letters, checks, emails, phone calls, etc.… and we thank you so much. It means more than you will ever know. We love you and please know we would not get through this without each and every one of you. Denise D’Alfonso, thank you so much! I wish I could give you a huge hug right now. Ravishing Rose, hugs to you as well. We returned from a long relaxing weekend in Marco Island, Florida. It was beautiful weather and everyone stayed healthy. We love it there being able to walk the beach every morning, picking shells with the girls and of course swimming in the beautiful pool. Leah loved the slide and would play on it for hours at a time. Great time and great memories! Both girls got a couple beaded braids in their hair and Leah kept saying, “doesn’t my hair look cute Mommy?” I met a lovely woman who worked the concierge desk at the hotel who suffered a similar journey as us with her angel son. I’m sure our paths were meant to cross for a reason. She was such a lovely lady with a lot of positive things to say and assured me that no matter what happens it will be OK. Thank you J.J. Going home, our plane was canceled until the next day so we had to get a room close to the airport which cost us another $200.00 and it was a dump. The airlines did nothing for us but we are trying to get some type of voucher now. Well, as if we don’t have enough to worry about, we received a very disturbing letter at Leah’s childcare center stating that they are thinking of closing it and turning it into a cancer center. (no, this is not a typo, as cancer does not deserve a capital letter). Sad when childcare centers close to create more cancer centers; what is this world coming to? Is money the only thing certain people care about anymore…cancer is a big money maker so let’s build more cancer centers. Terrible that all of these families may have their lives turned upside down when they potentially could have to find other daycares. What really kills me is that this daycare is a state-of-the-art center and has wonderful teachers. The childcare center already has a great reputation going for it. (okay, I will zip it before I say something negative about the hospital that wants to do this) Zip it Karen! Thank you again to everyone for your continued prayers, hugs, smiles, guestbook entries, etc.…. Leah and Kylie are doing great. We continue to do alternative medicines/supplements for Leah and she is doing fine. Her one eye is occasionally a bit lazy and her knees are sometimes sore from the darn steroids she used to be on. Thanks for taking the time to read about us and letting us share our story.

February 10, 2005 Wow, as I sit here crying I thought I better start to jot some thoughts down. I just finished reading a caring bridge page www.caringbridge.org/pa/rachel about a little girl named Rachel who was diagnosed with the same thing as Leah and diagnosed the same week as Leah yet became an angel in October. I’m bawling my eyes out as she was a beautiful girl and am actually having a hard time breathing Must be anxiety. God Bless you and your family Rachel! You are beautiful! Leah is doing well and just got her hair cut in a short bob. She loves school and comes home with pictures everyday and they always say I Love U Mom, Dad, Leah, Kylie and Batman. Batman is our cat for those that did not know that. The Love is always in the shape of a heart instead of writing the word love and of course we save every drawing. We continue to do alternative medicines and we are getting ready to contact the University of Texas Center for holistic medicine and Dr. Brodie in Reno, Nevada. My cousin (Thank you Pam!) was kind enough to let me borrow some books and one is all about various doctors and how they utilize alternative medicine in their cancer treatments. We are selecting Doctors from this book and/or centers. Dr. Brodie is doing a clinical trial with Polymva which I have heard some good things about so we are anxious to contact him. Dr. Keith Black who we wrote to back in November and paid $50.00 for a consultation fee still has not responded to us. He is out of Cedars-Sinai which is where all the stars are so I hear they are very busy but that is no excuse. We deserve a consultation….Leah deserves a consultation for heavens sake!!! I understand he is a great doctor and healer. What a busy day! So, so busy at work, busy with helping Kylie with homework and then trying to find time to enjoy family. How does one do it? Yes, I’m very stressed today. We have had people say we look sad all the time and I don’t know what to tell you other than, YEAH. We are trying to just get by day to day and that is really all one can do. We find spending time with the girls and showing both Leah and Kylie lots of love is what is truly important to us. We are looking forward to getting away for a long weekend Thanks to everyone for your continued prayers and support. We love the notes in the guestbook and they help us so much. Check out the last picture with Leah and Phil at the Daddy/Daughter Valentine dance. Take care everyone.

January 31, 2005 Leah is doing great and having a lot of fun. She loves her family so much and is always telling me so. One of her favorite things to do is watch America’s Funniest Video’s with Kylie and her Mom and Dad. She is so sweet. Speaking of sweet, she went to her first “Daddy Daughter Valentine Dance” on Sunday put on by the city of Livonia. She looked so cute in her little dress and corsage and she brought home the cutest picture of her and her Daddy. We’re so glad she is able to do this for we are always fearful of what the future holds. She is doing amazingly well and the few effects I see such as one lazy eye and some pain in the knees could be a result of the radiation or even the steroids. Her next MRI is scheduled for 2/24/05 and the anxiety level we have before one of these is tremendous. We are going to take a much needed long weekend away before the poor thing has to be sedated again for the MRI scan. We wonder if we should truly be doing them every 3 months like they recommend or is it better not knowing and just watching for signs. Tough call. We continue to head to the holistic center every Friday for treatment and we also continue to give her enzymes, vitamins A and E, and SeaSilver which contains Pau D’Arco extract. We will continue to try everything that COULD be beneficial as long as it doesn’t harm her or ruin her quality of life. Quality of Life is very important to us! The place we go to has such a passion for their work and such a positive attitude which rubs off on the patient which makes it a very positive experience. Our Dr. who also has a license in hypnosis offered to hypnotize her with the thought that the body can heal itself and a lot of how we feel is how our mind tells our body to feel. Can’t hurt so we went once so far and we will tape the session next time and I will be taught how to hypnotize her myself. We would like to go see Fr. Vogan again for the laying on of the hands soon and we want to make a visit to Little Rose Chapel again. Please continue to sign our guestbook. I can’t tell you how much that helps and how often we go out there and read your supportive notes to us. We don’t know what we would do without each and every one of you. Yes, this is difficult to say the least but we are getting by knowing there are people out there like you who care and we thank you from the bottom of our hearts. Thanks to everyone again who remembered Leah and thanks to those that continue to remember her. We love you Leah!!!!!!!

January 18th, 2005 Hi everyone. Sorry it has been so long but we’ve been very busy preparing for Leah’s birthday parties which were last Saturday. Also now that we are both working it has been very hectic and the projects at work are piling up!!! Leah had two birthday parties on Saturday and they were both a lot of fun. She had a clown come to the first party in the morning (Ms. Uffie) and she was great in painting the children’s faces and making balloons. The evening party consisted of family and friends and Leah received so many presents it was like Christmas all over again. Happy 5th Birthday Leah!!! We just came back from the oncologist today for Leah’s monthly check-up and all is well. She said Leah looks good and stable and there is no reason for any concern at this point. All of her reflexes were good and she passed the walking test and eye test. The lazy eye that I mentioned before is not really anything to be really concerned with and could even be a result of the radiation. A lot of what we are noticing could either be the result of radiation or the outcome of being on steroids for such a long period of time. She told us if the tumor is giving her problems it would be consistent and she would continue falling down or show tiredness everyday. If the tumor were to grow she would show weakness on one side ALL THE TIME. She even said she could do gymnastics although Mom is a bit afraid of that still. No restrictions were put on her. I’m feeling at this point that Leah is going to be one of those children that will be able to live with this even though it is rare. There was only a small chance she could have ever come down with this so why can’t she be one of the few that lives with it. Leah’s next MRI is scheduled for 2/24 and we are praying about it everyday. We continue to utilize alternative treatments every week thanks to the generous donations from all of you. I really believe in it and Leah is very happy after having had the treatments. She is full of energy and extremely talkative; we sure wish we had the energy she has after she leaves the holistic center. We have remained very faithful to this treatment since about the end of October so we shall see. I am very interested to see the results of it for sure. Karen is off of all medication now and I have to say it was a very tough road but I made it. Horrible withdrawals occur from Paxil so to those of you that are on it, beware. You must wean yourself off very slowly and if you are like me you will feel miserable for 3 weeks or more. If things get really bad again where I am crying continuously in front of the girls I may have to take something else. I will always try holistic, alternative medicine from now on first. Leah is doing well and I thank all of you out there for caring enough to read these updates and just for listening. Thanks for signing the guestbook as well for it helps us to move forward; I can’t tell you how much it means to us to read all of the wonderful notes from caring friends and sometimes people we have never met. We are so blessed to know so many wonderful people. We are feeling positive and Leah is happy so that is all we can hope for right now.

January 4th, 2005 Leah started back to school today and it was a little tough leaving Mommy in the morning. After staying home for a week with Mom and Dad I’m sure it was difficult for all the little ones. Just a quick update – Leah and I just finished Reikei healing (ray-kee) which is spiritual energy healing with the thought that the body can heal itself with positive energy. I sure felt better afterwards. The bible says we have everything here on earth to heal ourselves, of course it probably didn’t think we would be breathing in polluted air, food with chemicals, etc. We received a letter back from the Barrow Institute in Arizona basically telling us that we are in good hands at U of M and that there is nothing further they can offer us. Dr. Rekate wrote the letter and did state as we have heard before that radiation allows for a “honeymoon period” which is what she is in now. God, I hope it lasts forever. An interesting thought I keep having is that Leah is a mature soul and is so giving, unselfish, loving, kind, and to me perfect. The only time I see her cry is if her feelings are hurt because she is sensitive. She never asks me for anything and is always thinking of her sister first. Does God want back the children that do not have any issues, the ones that are “perfect”? Interesting…..also, the brain stem support group that I am in believes that all of the children that get this horrible tumor have higher than average I.Q.’s. Really makes one wonder. All I know is that we are not ready to give her up and probably never will be. On a sad note, another warrior, Tyler Townsend from Belleville who was diagnosed during the same week as Leah with exactly the same thing at the same hospital passed away last night and went up to heaven to become an angel. He was 6 years old and a beautiful boy. We will continue to pray for Tyler’s Mom, Tammi, during this difficult time. I have talked to Tammi on the phone but never actually met her and my heart just goes out to her. Why can’t there be a cure for this horrible disease and more awareness out there. It just sickens me that approximately 15 doctors from all over the world can say, “I’m sorry, I wish there was something I could do.” We’re supposed to have this sophisticated world with modern medicine and people keep saying to me, medicine has come a long way. Well it is hard to feel that way when you can’t help my daughter!!! Upset, yes I am to say the least. This is why we will continue to utilize all of the alternative treatments out there, Energy frequencies, vitamins, frankincense, and more. We will not give up and will continue to do whatever we can that will not hurt her. We love you Leah! You are our perfect angel forever.

2004 Updates

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