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 ...

That's what our lives all are, an open book. Today I am feeling good, tired as all heck, but good. Ambers ANC is slowly rising and we are all happy and hopeful. Jesse and I are trying to rearrange the house a little more, clean and make things comfortable for us all. Jordan, Ambers fiancée came and reorganized their bedroom here, and made it all nice and cozy for them when they get out of the hospital. We are so excited that she will be coming home soon. Thank you for all of the love and support. Keep it coming. Her coming home is not the end of this journey. It's merely a step in a positive direction. There will be home IV's, a special diet, and a LOT of appointments for blood draws, and bone marrow checks. For three years we will be lighting candles trying our best to scare away this monster. It will be under her bed, at our door, on the porch, in front of our house, down the street getting coffee, then hopefully gone for good. I know it will be knocking. I kno...

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...

I know, I should update more often, sorry. Frankly I have been so overwhelmed with everything that when I think about it too much I just start crying. Christmas week was one spent in the hospital. Amber had her bone marrow transplant on Christmas eve. Jordan, her fiance had a "cold sore" and was not there all week.... I think he just needed the time off. It did not go unnoticed by her that he was not there the day of her transplant. Jesse worked that day too. It was Amber and I alone in the hospital on a BIG day. They call transplant day your 2nd birthday. Let me explain for a second the transplant. It is not a surgery. It is an infusion that hangs and goes right into her hickman. Her hickman placement was a surgery, yes. The transplant is quite non-invasive. It looked like thick, red blood. She did pretty well. About an hour into the infusion a couple of her nurses came in to ask Sheryl if she needed any help. Then they said, "okay, we really just came to see Amb...

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 ...