October 28th, 2004
Hope is the Thing with Feathers
Saw this piece of Emily Dickinson (from Part One: Life) on the wall today as I will filling out Spencer’s pre-admission paperwork at Children’s Hospital.
Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I’ve heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
Today we were just in for blood work and some platelets after the blood work came back with platelet count too low. Tomorrow is a bone marrow aspiration (for lab work to check progress) and lumbar puncture (aka spinal tap, in this case for prophylactic central nervous system chemo – intrathecal). Spencer’s ANC was 138 today, so we need to avoid exposure to bunches of potentially sick people – such a nice day to be at a hospital for six hours.
Two key results of a CBC (Complete Blood Count) for Spencer are platelets and Absolute Neutrophil Count (ANC).
The platelet count tells how effectively his blood can coagulate. This is rather important before doing a procedure, by which we mean in this case poking a large needle into his hip to draw bone marrow and a needle into his spine to collect cerebrospinal fluid. Normal results are something like 150,000 to 400,000. Dr. Sharp would like 75,000 before doing a procedure. Spencer’s is 45,000. Last week it was 40,000 and we did platelets (and red blood cells because those were low too) before his port-a-cath and lumbar puncture.
The ANC is trickier. It’s not measured directly. First, we take the White Blood Cell count (WBC) and then we multiply that by the percent neutrophils to get the ANC. It’s simple, but wait. If the CBC has manual results, there are two percentages (segs and bands, two different kinds of neutrophils) that you add to get percent neutrophils. Happily, our lab results include the ANC (to one decimal place on automatic tests, 3 on manual). Usually, the ANC is given in units of thousands, so you need to multiply accordingly. This must be nightmarish for those who hate math. Rachel and I both handle the numbers comfortably. Interpretations vary, but Dr. Sharp divides things into three ranges: above 1000 is good, 500-1000 is low but acceptable, and below 500 means we should restrict contact with potential bacteria sources. Today’s 138 is a new low.
And yet, hope is there perched in my soul and she sings a beautiful song.
Spencer is courageous. He’s my new hero – sorry, Lance. It’s really the little things that do it. As terrified as he is of needles, he handled today fantastically well. He was scared, but brave about having his port “accessed” – meaning attaching a line by poking a needle through his skin into the port-a-cath. The EMLA cream numbs it up and helps. Once the line was in, he calmed down and handled the day brilliantly. He decorated a halloween bag for himself, another (smaller one) for Jacob (“he can use it next year, when he’s old enough” – Jacob is 9 months old). He cut out approximately 800 paper pumpkin noses, 8 dozen “bat wings” (roughly rectangular, somewhere around the golden ratio), 6 dozen “monster claws” (long skinny rectangles), decorated a pumpkin, and made a witch. After all that, we had lunch and then (finally!) the platelets arrived from the lab and we spent 30 minutes getting those on board before we came home. Spencer crashed from the benadryl they give to avoid reactions to the platelets. This evening, he was even willing to try the Nystatin to help prevent mouth sores. We’ve been having problems with liquid medicines since they were using grape syrup to hide the taste of his steroids. For everything else, we’ve gone to pills, but the Nystatin needs to be swished and preferably swallowed. Tonight we swished and spit and discovered it’s not so bad. Spencer says tomorrow he’ll try swishing and swallowing, but not until after his procedure. He and Rachel are asleep in our bedroom now. Spencer has asked to sleep in our bed when he’s scared because of a procedure because “having leukemia is scary”. He’s my new hero.
