I have always been honest with you, and the time has come once again for me to meet you with the truth. I truly believe that we have reached the beginning of the end. Ellie has gotten a fever, but she has no symptoms of a virus. After checking her blood yesterday, the doctor has told us that her counts are dropping. The fever and low counts mean that her bone marrow is "compressing" and losing the ability to do its job. Ellie is dying. Yes, God can still do a miracle. And yes, there is that outside chance that the fever means that the tumors are dying instead of getting worse, but if that were true the blood counts would not be lowering (I think).
I went to bed not knowing what to write to you all, but I awoke with one clear thought in my mind. I need to ask all of you the hardest thing I have ever had to ask of you: to let go. You have prayed and loved and cried with us. You have taken Ellie into your hearts and lives, and now I would ask that you join with us as we open our hands and let go.
Ellie is still alive, and so our time to mourn has not yet come, but our time to release her has. Ellie is not now, nor has she ever been - ours. God brought that tiny little bundle of joy into our lives nine years ago, and by His grace we have done our best to protect and care for her. I can honestly come before you now and say that we have not done a perfect job - we have made our fair share of mistakes along the way. But we have given it all that we have, and we have no regrets. I told you some time ago that making the "right" decision does not always mean that it has the outcome that we want. At this very moment, I have a clean conscience before God that we have done right by Ellie. We have honored her wishes while fighting for her life with all that we had. We will not look back. We have trusted God to lead us and guide us, and we believe that His guidance was true.
So how are we really? We are neither brave nor strong. Frankly, most of the time we are a mess. We are sad and overwhelmed and scared. But I have to say that as of yesterday, my heart feels such peace. That doesn't lift the sadness, but the peace is strong and steadfast. John, right now, would rather go sky-diving without a parachute. We have taken turns crying. I found him the other day working on the house and fell apart in his arms, and yesterday he called me from work crying. This morning he called from work and said that he's ok as long as he doesn't try to think about life without Ellie. Yesterday Ethan was a love. He has been happy and sweet, as long as I am close by. He takes every opportunity to snuggle with me and kiss me. And Ellie is the most amazing of all! She can feel quite a bit of pain at times, but Motrin takes most of it away. She is not wanting to eat very much, but has to get some down so the drugs aren't hard on her stomach. That has been a very tricky dance. Ellie has been unbelievably sweet. Smiling and hugging us constantly. Last night she drew the most beautiful pictures for us, and she signed and dated them. She appears to be completely unaware of what is really happening. What is in her heart of hearts, I don't know, but as always, I follow her lead and answer the questions she wants to know. For now she does not ask if she is "going away". She has actually been making plans for the future - things to do and people to see. I have thought about how wonderful it would be for Ellie to plan on having a fun day the next day, and then wake up in Heaven. I don't know if that's how it will play out. If she senses what is coming, I will certainly talk with her and cry with her, but I am trusting God for Ellie's death to be perfect... for her. I do pray that God will allow Ellie to have her wish to die in her sleep. Somehow I think that He will, but I trust Him to know best.
I will leave you to soak all of this in for now. I am sorry. Thank you for choosing to be on this journey with us. Your love and support have made all of the difference.
“The Lord giveth, and the Lord taketh. Blessed be the name of the Lord.”