From my point of view

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...

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...

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 ...

Forgive any errors please I'm (again) posting from my phone. I'm trying to get used to it. It's been really nice having her home this past week. Her marrow came back with only 3% blasts and they consider 5% full remission. They can't even tell if that 3% is bad! Awesome. We're all quite thrilled to know she kicked out healthy cells so quickly. They said she could go straight to transplant. IF they can get everything scheduled and ready quickly. We've enjoyed the week. Once Amber felt like eating we fed her whatever she wanted. (Sushi was high on the list.) I received a package in the mail from childhood friends. I missed the delivery so Jesse an I had to drive to the post office and pick it up. I'd not been to this particular post office yet. It was basically a package pick up place. I cried my eyes out reading all the well wishes and even a special song written for Amber. It made me feel so special to know how much my friends care and how much they pa...

Worry is not a good enough word. Typing is not helping. I used to want to reach out and now I just recoil. Nothing is within my control! nothing. I'm an admitted "control freak" or, I was. I used to be. That was the only way I could feel "safe". If I'm in charge, then nothing can go wrong. If I'm in charge, then no one can hurt me. I think a lot of people feel the same way. It's self preservation to be selfish. It's self preservation to be a control freak. Here I am now with no tools to fix these problems. Here I am with no more strength to carry them. Oh but they are there. They are breaking not just my back, but every bone in my body. I feel strange. I feel angry and sad all at once. I sometimes question things that I already know the answer to just to make myself feel better. Lately when someone asks me "Is everything okay?" I just say "No" No everything is NOT okay, but you know that, so stop asking. Yesterday ...