Good morning to all of Jesse's friends and family,
I have posted a picture of Jesse's room so when you are reading about the things going on here you will have a better picture in your mind. It's hard so tell you all about all the things she goes through. Some are so personal that I probably shouldn't. I know Dee holds back a little. We send pictures of a happy, beautiful Jesse doing something with her friends or being somewhere when really that's not the little girl I hold in my arms right now. My intentions are not to make anyone sad but rather to let them know the reality of the situation.
You read books and hear it said so often how different men and women are. If you look at your own relationships, or people that you know, it's true for everyone. I have always been the rock. The solid fortress that my family has been surrounded by. If you want to get to them you come through me. Good luck. I think most men fit this roll and it is expected of us. Women look for that in a man so they feel safe as they play out their role as "home base". The organizer, caregiver and so much more. Women that have to work come home and have to do all of this too as if one job or the other wasn't enough. I can't tell you how much I admire ALL women and especially ALL the women in my life. Women have the open arms where we can run and hide while they solve all of life's ups and downs as they happen in the family. They put the bandages on all of our problems. They have the listening skills, that are put to work each day, to hear each problem regardless of how small and yet make you feel it is so very important. Dee is all of that and more. She possesses so many admirable traits and is so strong when it comes to all of the adversities we have encountered in the last 18 years. She is the one holding our family together now since my broken heart has left me of very little use in that area. I felt like I was once invincible and my emotions were gaurded. I don't think Dee had ever seen me cry until all of this. (Who ever said cowboys don't cry never had a kid go through Leukemia treatment). I didn't share my feeling with anyone outside my girls. I have become transparent (that must God at work). I don't consider myself weak by any means......just broken. I lean on Dee more and more as Jesse's health hits critical points. I have never been much of a social person. I can say besides Dee being my best friend I only have a couple of guys that I would call good friends. Dee on the other hand can be a light in any room she walks in. People are just attracted to her and her personality (duh. She's beautiful). I just want to say thank you Dee for allowing me to be part of your life. Thank you for being my best friend. Thank you so much for the help you provide to me each day getting me through this.
Sorry. I thought we were doing good. Jesse just threw up blood again so we have to start our count down over. The pain she goes through when she throws up in hard to describe. She cries through the whole thing so I know it's off the chart.. Her body is also sending the blood draining from her open sores out through the other end apparently. Her urine is orange/yellow and her pooh is black. I am so thankful. Her ANC is still 0. They gave her Platelets yesterday and took blood cultures. They are keeping an eye on her Kidneys because her Bellirubin is still high. She ran a fever for a part of yesterday. I crushed up her two Tylenol in her plastic mini shot glass her meds come in and added enough water she could drink them and chase it with water. That worked much better than trying to swallow two "rocks". That is the way they will be giving her anything she needs to swallow. Her breathing is still difficult. With her swelling still being so bad she has to breath through her nose. I was curled up with her and as she was falling asleep she started to snore. She woke up and turned toward me. I could see in her eyes what the question was. I said "that wasn't me". She got embarrassed about it. I told her it was no big deal and her body didn't have a choice but to breath like that. Through all of this she is still trying to be such a lady. She worries about people seeing her in her condition. In fact I think this post is the first picture of Jess with no hair. I didn't ask for her permission....I know what the response would be. She says she is sorry when ever I have to do something for her. Even thanks. Doesn't she know I would do anything for her by now and she wouldn't have to say a word?
This day will blend into the next and into the next until we get Jesse home. I put myself in her place (probably why I am such a mess) as I think about her not sleeping in her own bed. I don't think she has slept through the night without being woke up or having to go to the bathroom since October 17th when we admitted her (it's already been that long). We medicate her when she is home and she has a pole and or backpack giving her meds when she is home. How nice it would be to be free of all of this if just for her stay at home.
By the way. Check out her pole (Baxter). That beast is heavy and hard to manuver to the bathroom when you are in a hurry. It's feeding 8 lines of meds into her right now. Our room is 8' wide and the length of a bed (in case you can't tell). The curtain separates you from the baby crying next to you or right now the Spanish channel on until 11:30pm.
Today, and every day, hug your loved ones with a kind of hug that speaks without the need for words. Love, and true love like Dee and I, don't need words when we are together. But it doesn't hurt to say it either.
Thanks for all the support and prayers. We love you all.