Willem had biopsies done on both sides of his brain yesterday afternoon -- it was done to confirm the findings of the MRI and to assist us in the decision we must make very soon. I hope that I do not have to explain what I mean by decision. The neurologist said that there was a lot of necrotic tissue on the right side of the brain and found more on the left. Had the disease not attacked the left, there was still some hope.
Willem's head is partially shaved. We were handed a vile of the hair that they cut off. It was a horrible feeling. We still have the hair from his first haircut.
"Unrelenting pain and anguish unlike anything ever felt before." Syd said this last night and the words look like they should describe the feelings we are having but they are still inadequate. There are no words. We are in a tormenting fog that is so unbelievably painful. Guilt for not having done the things that Willem wanted to do; guilt for the times we've gotten angry; torturing ourselves with all that Willem was to become... I wrote a letter once, at the request of his school a few years back, for Willem to read on the day of his high school graduation. I cried while writing that letter but in it I told him how proud we are of him for becoming the man we knew he had become. There was no doubt in our minds how well he was going to do personally and academically. The letter sits in a sealed box in the basement and it torments me -- I've not seen it since I wrote it yet I know it's there.
Liliana has a fever and Wyatt wants lunch. Erin is at the hospital and I am at home with the children.
Willem -- only days before he was stricken with HLH -- leisurely walking, straw in mouth, not a care in the world. A healthy 9 year old boy.
Thomas, my heart goes out to you. Willem has become everything you knew he would & more. He has been a brave hero and a light to many. He has touched more lives and more hearts around the world through his disease and your writings than you can even fathom. I know the pain you are feeling and there is nothing any of us can do or say right now. But the prayers we need to send are for your heart to be eased for you to let go of any guilt. For you to know that you & Erin are amazing parents and have been amazing advocates for Willem and you have loved with all of your heart. So hold your son, climb in bed beside him and let him feel your love for him radiate through you. And hold your wife and Wyatt and Liliana. You all need one another now so much. Lean into that. With all my love. Peace to you & your family. Carie
ReplyDeleteOh thomas I am tears right now, my heart just breaks for you guys I can't even imagine how you guys are feeling right now. Willem is a great kid and we are grateful to know him and will continue to pray for him through this. You guys are in our thoughts constantly.
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