Emily was born on August 16, 1994. She was diagnosed with Acute Lymphoblastic Leukemia relapse on April 7, 2001 after 2 1/2 years of chemotherapy and almost 3 1/2 years of remission. She received her cord blood transplant on October 2,2001 (her "second birthday") and this page is provided to keep all those who care for and love Emily updated on her current condition.

Journal

Tuesday, June 27, 2006 1:34 PM CDT

Hi! It has been a LONG time since our last entry. So much has happened since then. Emily is now 11, and will be 12 in August. She has her delightful smile back as well as her dry sense of humor. She plays and fights with her 5 year old brother Jack like every other child (and I love it because it is so NORMAL!). She has some great friends and she is an amazing artist. AMAZING artist. :) She will be in the 6th grade next year. While attending her graduation, it felt unreal to me. So much has happened in her short life. She still struggles with school but I don't worry about that as much as I used to. I guess because that's what calculators and spellcheck is for. And because it's really ok if she isn't a whiz in physics and economics. I will post some updated photos of Emily (and Jack) soon so you can see how much she has grown. We are so proud of her. She has taught me more than any adult I have ever met. Thank you for continuing to check in on Em after all these years. The suppport and love you have shown us helped to get us through those trying times. It will be 5 years post transplant in October!!!! Hard to believe that it will be five years.

I heard about a show on PBS documenting the lives of 6 families with kids battling leukemia (and other childhood cancers). So I watched it last week. I don't know why I watched it because it could have backfired and left me really depressed. It was eerie watching those families.
It was like reliving those days again. It brought me back to the sleepless nights, the anxiety, the tears, the anger, the disappointment, the desperation, the denial, the confusion, the seemingly bottomless despair. But I was ok.
In one scene, the mother of a boy with leukemia had not left his side for weeks. She finally decided to go home and take a quick break. While she was away, her son's condition plummeted and he was on the verge of death. She came back to the hospital, saw what was happening and kept saying, "I shouldn't have left. I shouldn't have left." It was so sad.... I don't know how many times I have seen that and the following self-torture of "what if". A friend couldn't believe I would watch that program. She asked me if it was cathartic. I don't know if it was. My best friend used to believe that I have a bit of PTSD because of the length and intensity of what we experienced... And I guess because I used to cry for no reason, or I would see/hear something that would trigger a memory of that time and I would be really depressed. Thank goodness I don't do that anymore. :) It will be 5 years in October. They say you're considered cured at the 5 year mark. But for me, it never feels like it's really over or that it's ever truly safe. It was never supposed to happen. It was never supposed to come back. It wreaked unbelievable havoc in our lives. There's always a small part of me (whether I am consciously thinking of it or not) that is terrified of the fact that it can come back. Nevertheless, life does go on. And I look at her today and can't believe what an incredible girl she is. She pointed to the 5 scars on her chest once (from her surgeries), and commented on how they looked and how many she had. I told her she should never be ashamed of them. They are her battle scars and every time she sees them, she can remember what a brave and strong, and most especially - special- girl she is. I used to weep and mourn the death of the child that she used to be and the dreams that I no longer have for her. But cancer gave us blessings too: people we never would have known, the gift of witnessing great love, humility that we didn't know we lacked, strength that we didn't know we had, teaching us that it's ok to be silly and have fun, finding joy in little things again and perspective. And the best thing? Now I have new dreams for her and I don't think as often about the old ones. :) Thank you for all your prayers. God bless.


Kathleen

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E-mail Author: khkdomer@yahoo.com

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