Preston's fight against Acute Myeloid Leukemia

This past Sunday the girls and I walked in to Preston’s room as the nurse was finishing up with his bandage change. Stephanie looked at Preston with this concern on her face and said “bru-bru hurt”. She was looking at his chest with 3 tubes coming out of it with a big bandaid on top. My heart hurt but not nearly as much as it does right now to find out today that this last round of treatment failed as well and that there is nothing more we can do for Preston. There was improvement from last round but not enough and by time his body recovers from this round, they expect it to be worse. This cancer is strong and relentless.

I had to come home with Stephanie this afternoon and felt terrible that James was there by himself to hear the news. James and I have been together for 14 years and before today; I have only ever seen tears in his eyes, never actually crying. Every round or every time we had bad news, he has always been the one to pick me up and give me hope. Today when he called me to tell me the news, he was crying and he said that we were now hopeless. He is telling me all of this while Preston is trying to get his attention while he stares out the window to watch the crane that has been parked directly outside for the past two days lifting up stuff to the roof. He was talking to me about bringing Preston home maybe next week, going to Disney, making sure we have fun, and about how much this just sucks. He told me that we are not going to tell Preston but when time gets closer that we will need to start talking about Heaven more and how Preston has never sinned and should go straight to Heaven. These are all the things I never expected to be discussing with my husband and that we could cry for the next few days but then we need to be strong for each other and for Preston and Abby. Honestly, I have been trying to be strong for so long and I just don’t know if I can do it anymore. I can’t stop crying and don’t think I can anytime soon. I am so heartbroken over this. I just don’t understand. Everything I have prayed for was not heard. I don’t know how to even pray for what is ahead of us. I don’t know how to do this and I am scared out of my mind. My life for the past two years has been about loving and taking care of Preston all day, every day. How am I going to survive without him? Every day, we tell each other how much we love each other, I can’t imagine the day when he won’t be able to tell me he loves me anymore. And how do we prepare our children for this, especially Abby. She came home tonight and after our friend Kerry and her girls left, her first question was “so was it good or bad” and when I said bad, she said “does that mean the D word”. I am so scared at how this will affect her and our family. Abby asked why this happens to a 4 year old and asked why God was mad at us. I said he wasn’t mad at us and she said is it ok that I am mad at God. I have to admit, I am mad too but I do still feel thankful that we were blessed at times.

I have spent so much time looking up articles to try and find better options and rays of hope over the past few months. The majority all said what news we got today, not good. Relapsing after his first initial 5 rounds was not good and didn’t have great odds. Then to relapse again after a bone marrow transplant, very limited success has been found, even with DLI’s. I really prayed Preston was different. He has handled it all so well besides the mucositis. Even with all the articles I read, I was not prepared for this. I guess Dr. Kennedy (in Houston) was right, his cancer is not curable but I am so glad that we tried. I would hate to live with the what if’s if we didn’t.

We need to talk to Preston’s doctors more and try and figure out our options. Right now his stomach hurts from the mucositis and we have increased the pain meds in his pump. We have a lot to talk about but we would like to bring him home for a while and let him enjoy being home while he still feels ok.

I have a million things going thru my head and wish I didn’t have to deal with any of it and could just focus on our family. We have to think about work, Abby’s school (most likely going to pull her out for a few weeks to spend time with her brother and family together), Stephanie, bills, doctor, funeral, and hospice expenses.

I said before that I am so thankful for the blessings we did have and it is so true. I am thankful for every day I have got to spend with Preston since he was first diagnosed over two years ago. I am thankful that I have such an amazingly strong, funny, and cute little boy. I just don’t understand what I did to deserve this, what our family did to deserve this, and most of all what Preston did to deserve this. I am thankful for the fight that Preston has had in him but at the same time can’t help but think why if he has been so strong, and for the most part, healthy through this, what we did to deserve to watch him slowly pass away. I feel like we are being tortured. I am never going to accept any of this but I have to wonder if it would be a little more acceptable to me if he was really sick and got the news. I do not know how I am going to be able to do this.

This was not the news I was hoping to share. Thank you everyone for your prayers and continued support. I will update again soon.