Charlie Knuth's Journal
Written Oct 16, 2012 11:22pmEach time I update Charlie's condition I am fully aware that his condition switches from one extreme to another. One week I am fearing for his life and the next week I am celebrating his recovery. These ups and downs, highs and lows never become routine or familiar. I have feared for Charlie's life more times than I can count on two hands. Each time is just as horrifying, traumatizing, agonizing as the time before. I will never become "used to" the thought of living without Charlie, nor will I ever become "used to" witnessing his suffering. A week ago, Charlie was in the hospital. His counts had plummeted, his skin was falling apart, wounds were once again angry and "on fire", and his stomach was distended. This night a week ago, I was lying awake and rehearsing in my head the bone marrow biopsy that would take place the following day. I was imagining and expecting the doctors to inform me of Charlie's dire diagnosis. "Mrs. Knuth, Charlie's bone marrow has no cellularity, his marrow is not recovering and we don't know why. He is no longer producing platelets, red blood cells, or white blood cells. The cells which enable life. We have to come up with a plan, but first you will have to wait, and watch Charlie suffer, for weeks, just like you did the entire summer while we figure out what to do. The "flashbacks" of Charlie's suffering kept me awake most of the night. The thought of telling Charlie he had lost his graft had to be immediately shut out of my mind because it was just too much to bear.The next afternoon, Charlie had his bone marrow biopsy. Results did not come back before the weekend. I talked doctors in to releasing Charlie back to Ronnie's while we waited. Charlie was becoming so quiet and withdrawn. So, they did. I ran IV antibiotics every 8 hours, weened Charlie off of IV steroids, administered IV GCSF 2 times a day, and GM-CSF at night right from our room at Ronnie's. I would have nursed him around the clock just to be out of the hospital. His mood immediately lifted when we opened his hospital room doors and rolled him out in the hall. Over the weekend, his big brother Alex and his Grammy and Grandpa came to visit. Charlie became Charlie again and I was once again happy.Monday we had a clinic appointment. Charlie's bone marrow cellularity went from 20% (from the last biopsy on 9/11/12) to 80% cellularity!!! and, he is producing platelets, red blood cells, and white blood cells. Most likely, he once again caught an unknown virus, his bone marrow was suppressed, and because of his low counts his blood became infected with a gram negative bacteria.Once again, Charlie's skin is looking wonderful, he is happy, laughing, playing, and eating more than he has in his life time. I am celebrating his success once again. I often ask myself if all this is "worth it." Take a look at this video and see for yourself....
Written Oct 8, 2012 9:04pm
I am trying to write something. Anything that helps me right now. Trying to express this emotion and physical pain I am feeling. I never signed up for this. I never signed up for the agony I am feeling. I never knew how much I could love this little boy. I never even thought about how it would feel to lose him. These ups and downs are mental torture. People often say that God never gives us more than we can handle.......This is becoming very hard to handle. I very much am wanting to scream and cry but I can't. I can't let Charlie see me upset and scared. Once again, his bath was painful, blisters are raw, his tummy is distended. We are reliving the nightmare we just lived a few months ago. Charlie told me tonight that if he could "hit the EB away, he would punch himself right now." I just want to wrap him up in my soul and protect him. I am so sad. My god, I am so sad.
Written Oct 6, 2012 8:36pmPlease click on the facebook link below for quick daily updates and pictures.