2005 Journal Entries

I wrote a comprehensive journal entry Friday night, detailing Archie’s progress over the past week. Just as I finished writing, after I saved the document I created, the computer froze and began making this horrible grinding noise.

“Uh, come here,” I called to John who was folding laundry. “Something’s wrong with the computer.” As soon as I spoke, the Blue Screen of Death appeared.

“Oh, crap,” John sighed. “I think the computer just died.”

John worked to recover what he could from our hard drive. He even recruited Camille, my brother’s wife, to assist, but so far we haven’t been able to salvage a thing. Our hard drive is gone. We’ve lost everything that hasn’t been backed up on disc, which for us is basically, well, everything. Figures.

So here I am this afternoon, sitting in Archie’s hospital room, typing on our new desktop computer and trying to recall what I wrote Friday night.

Archie had surgery Friday morning to implant his dual lumen port on the right side of his chest. The port replaces Archie’s Broviac catheter, which was removed when it became infected. Like the Broviac catheter, the dual lumen port is a central line placed in a large vein in Archie’s chest that will be used to administer medication and blood products directly into Archie’s bloodstream. Blood labs can also be withdrawn from the port without repeatedly inserting a needle through Archie’s skin and into a vein. The port can be left in place as long as Archie needs it permitted it doesn’t cause any secondary problems such as infection.

Archie tolerated surgery very well. He did seem to have a significant amount of pain immediately following the procedure, but a few doses of morphine really helped to ease Archie’s discomfort.

Dr. Stroud performed a bone marrow aspiration and lumbar puncture, or spinal tap, while Archie was sedated during surgery. The results of the lumbar puncture suggest that Archie’s spinal fluid remains clear of leukemia cells. Test results from the bone marrow aspiration also came back clear, indicating that Archie is in remission. This is good news, the best news we could hope for.

At 6:45 p.m. on Friday Archie began his second course of chemotherapy. Per his protocol, or study in which Archie is enrolled that determines his treatment path, Archie is scheduled receive two of his chemotherapy drugs intravenously for 96 continuous hours, and one of his chemotherapy drugs orally two times a day for four days. However, Dr. Stroud explained to us Saturday morning that he may cut this course of chemotherapy short as Archie’s cells are responding so positively to the drugs.

“The best we can hope for is for the cells to respond quickly and favorably to the drugs,” Dr. Stroud said. “The worst that can happen is that the cells aren’t responsive at all.”

“Kids with Down syndrome typically are very sensitive to chemotherapy drugs and their cells normally respond quickly,” he continued. “I don’t want to kill all of Archie’s cells this time. That’s dangerous to do, but we had to do it the first time to ensure we eliminated all of the leukemia cells. It may be that we cut this course short and wait even longer next time to give Archie’s bone marrow more time to recover before beginning chemotherapy again.”

Dr. Stroud also mentioned beginning Neupogen more quickly following the completion of this course of chemotherapy. Neupogen is a biologic response modifier, or a colony-stimulating drug. A colony-stimulation drug is a substance that encourages the production of blood cells and promotes their ability to function. Dr. Stroud explained that AML, the type of leukemia Archie has, is characterized by two colonies of leukemia cells. “We eliminated the first colony of cells with the first course of chemotherapy,” he said. “That’s the best that we could have hoped to do. But the second colony of leukemia cells likes to hide and that’s what we’re waiting to see so we can kill those cells with the rest of Archie’s treatments.”

Before completing this journal entry I also want to tell everyone that Archie has been an utter joy to be around for the past few weeks. He hasn’t been grumpy at all, but just plain happy. His effervescent personality has returned and for the first time in a long time we all remember how much fun being a part of Archie’s life can be. He’s full of energy and full of life, trying new things and practicing forgotten skills. We are all so thankful for the miracles of modern medicine.