2005 Journal Entries

Dr. Hayes has scheduled a bone marrow aspiration for Archie tomorrow morning after all. Archie’s white blood cell count increased a little over night. The increase may be a result of the sepsis Archie’s body is fighting, or it may be something more insidious, but an aspiration will give us a definitive answer: leukemia; pre-leukemia; or transient myeloproliferative disorder (TMD). We, of course, are hoping that the aspiration will confirm that Archie’s unusual blood counts can be attributed to TMD, or transient leukemia, a blood disorder Archie has had since birth.

To be honest, I don’t know what to think anymore. We get good news and we get not so good news, but more than anything else what we get is situational data that defies logic. But what I do know is that as time moves forward and one day leads to another I feel as if Archie is regressing more and more. I feel as if all the hard work we’ve put into helping, and coaxing, and encouraging Archie to reach his developmental goals has been wasted, or at least defiled. And I don’t think it’s fair. I know very well that life isn’t fair, but I can’t help but wonder why Archie always seems to bare the brunt of it. Hasn’t he already had his share?

I say that, but with my next breathe I contest that if Archie’s behavior is an indication of his wellbeing, I’d dare to claim that we have nothing about which to be concerned. It’s obvious that Archie still doesn’t feel himself, but he is more playful and social than he’s been for a long time. He danced to the music we played for him, and laughed as we joked with him. He pointed to his different body parts when we asked him to identify them, and repeated his words for us when prompted.

Archie won’t allow us to put him in his bed, though, and insists that his grandmother hold him all day long. He won’t let me hold him for longer than a few seconds and I suspect it’s because I don’t have much lap left. But he does want me near by, preferably sitting right in front of him, so that he can stare at me.

I’m encouraged to report, too, that we were able to discontinue Archie’s oxygen today, although he may need a little assistance again tonight. When Archie sleeps deeply, his oxygen saturation rate falls into the high eighties. Archie has been feeding well, but his food will be discontinued again tonight at midnight and he’ll have to receive i.v. fluids again until after the aspiration tomorrow morning.

Because the antibiotic prescribed to fight Archie’s urinary tract infection has been prolonged to a ten-day course, he will be hospitalized until Sunday. I don’t like the thought of spending another weekend in the hospital, but we’ll do for Archie what’s in his best interest.

Thank you again for all your care and concern, thoughts and prayers. John and I appreciate them all and know that Archie is fortunate to count each of you among his friends. Please remember Archie tomorrow morning and join us as we hope for the best possible outcome to Archie’s bone marrow aspiration.