From my point of view

I think about everything I've gone through and how much it holds me back. My life in true hell has changed me. It has changed all the parents I have met. This morning a thought came to me. "Don't let your nightmares destroy your dreams." I "lived the dream" I "lived the nightmare". Now to get back to living the dream. Perhaps a new dream. Maybe it's time to start dreaming of new things. I know I've changed so my dreams should change a bit also. It's perspective I guess. Amber is 118 days past her transplant. She's doing great. She's living in her own apartment with her friend from grade school. I hear she went to a party Friday night. This pleases me to tears. She trying to work with her boss to get put back on schedule and work. She's talking to the docs about letting her go back to PCC. We're living in the now. Amber kicks ass always, tried and true. My friend wrote a song for Amber he wrote about her leaving the ...

Five years ago today we found Amber's tumor. "Five Years" by David Bowie has been ringing in my head. I love that song. Today it's just strange. I'm glad we found her tumor. I'm glad I refused to leave the doctors office 'til we figured out what was really going on. I'm not happy my child had cancer I am happy we found it and happy she beat it. I know, I'm sitting here right now on the parent bed in the children's cancer unit as I type this from my cell phone. This is a whole different animal. This is Secondary AML It's strange. Sitting here still after five years. You need to consider that my daughter has had a surgery a year since remission. She spent a good amount of time at Shriners Hospital for Crippled children relearning how to walk, how to use her wheelchair, and how to dress herself. That was just after she was done with chemotherapy. Yet here we are. Five years is a big marker for Ewing's Sarcoma. This would be the ...

So Where do I start? I may be blogging random thoughts through the week. Today is January 6'th..... Five years ago a girl with the last name Couch was being diagnosed with AML Leukemia. Two days after, Amber's tumor was found and we were checked into ten south room one. She and Amber became fast friends her mother Laura and I became the best of friends. We were Mom's stuck in hell together. We cried together laughed together. Played games in the middle of the night with nurses. Had secret jokes. Stayed together even when we weren't in the hospital. She was a soft spoken amazingly beautiful and strong girl. They told her that she had a special DNA strand and that recovery would be easy. A year later she relapsed and in June 2009 we lost her. I say we because she was all of ours. Her love, her laugh, her amazing smile. She shared it with everyone. I'm crying now just typing this. We miss you so much Aimee and we know your standing by Amber because we can feel you...

The only sound in the room is the IV pump and the ringing in my ears. The light is just a little green light flashing with the words MAINTENANCE FLUID scrolling like a marquee. Every once and a while I hear my husband take a deep breath. He's not snoring. That's rare. I've been having chest pains for three days. Today they are better then two nights ago. Two nights ago I thought my sternum was broken. Feels like heart problems again from my bleeding disorder. I'm ignoring them because I want to be here for my daughter. I don't want her alone. I don't want her with someone that may be negative, bring drama, or make her feel bad because they have to be here too. I know this is all going to catch up with me but, fuck it, walk a mile in my shoes! Don't stand there throwing empty suggestions. My doctor said my body is full of the stress hormone cortisol. Hopefully exercising will help but the stress is making my belly swell, ache, burn and turn. There's...

I make birthday resolutions. That's MY new year so I figure its the best time. I usually take some time to reflect on the year. I do suggest everyone does this. Weekly monthly and yearly. Goals can not be achieved all at once. "If your going to eat an elephant, you have to do it one bite at a time." So far this year my health both physical and mental were my goals. Things like getting the care I need for my digestive problems, seeing a counselor, and such I feel pretty on top of. I'm even exercising and doing yoga at home. Currently with my house being rearranged the way it has. (Ambers stuff in our bedroom, the living room dining, room, and kitchen are Jesse and I's studio apartment.) I literally don't have a wall that is free. I lean on the door for stretches and so on. I've added drinking a lot of water. That really helps. My soap keeps my skin clear but the water really helps it stay healthy looking. I forgot how dehydrated a person can get. Add on ...

Imagine the conversations you have when you are meeting someone. Your common interests, views, goals. What religion are you? Who did you vote for? Do you want to some day own a house, have a garden? How about kids? Do you want to have kids? How do you want to raise your children? What schools do you picture our future child in? You dream together. You get pregnant and start hoping for a boy, or a girl. I hope she has your eyes and my smile. I hope he gets my sense of humor and your good looks. I hope He's tall like me and has red hair like you. Then discipline should we "spank" our child or use time outs? Let's make sure we stand together on things like, bed time, house rules and chores. No one ever plans for cancer. Who would ask such a thing? What would you do if our child was diagnosed with cancer? Would I stay at the hospital and you would work? Would we take turns? Would I be there for you when you completely lost your mind from stress? How long would you ...

My best friend and I have been friends since Amber was 3 years old. Best friends from the start, our relationship was unique to only us. Others would have their opinion or say whatever they wanted but they just did not understand. I would hear things from co-workers and other friends like, "can't wait to see you two finally be married." and we'd make that eww-gross kind of face and say "no, no, It's not like that." We would not wish ourselves on one another. We were however, best friends. We were a lot alike. Neither one of us too emotional with the other. Just a mutual respect and love for one another. He's still the only person to call me up and say "I just wanted to hear your voice." One time I was depressed over a breakup with my then "soul mate" and for months no matter how I tried I could not pull myself out of the funk I was in. He looked at me, kind of mock back handed me, and said "Snap out of it! I want my Linda b...

Sitting in the hospital next to ones daughter, with an adorable young doctor crying while typing in her pass-code is something one does not easily forget. My daughter looked at me and said "Mom she's crying." I remember thinking so many things but nothing came out of my mouth. I just looked at her, watched the other doctor frantically answer pages, and run in and out of the room; I could not speak. I could not even cry. She pulled up the X-ray that they were so frantically talking about us needing to see. These doctors told us oncologists were on their way to meet us. That it looked like cancer and we needed to see the oncologists. My daughter and I, alone, sat there astonished looking at this x-ray of her pelvis. I said ignorantly and loudly "Where's the bone over here?" while pointing at the big empty spot on the right side of the screen. The young doctor just started wiping her tears even more. The older doctor started apologizing for his candid behavior ...