Tuesday, September 9, 2008

Home Soon: T Minus 19 Hours and Counting

September 9, 2008 (second post of the day)

I don't know whether I will have time to post in the morning or not. Tomorrow morning I have to leave Houston again before the sun comes up to make it back to the Microplex to teach.

We stumbled through today with some ups and downs. Ted (Foote), Carlos (Blanton), and Ernie (Wright) all stopped by for visits and helped us break up the day. Erin demonstrated the plasma car to Ted, chatted politely with Carlos, and won a big stack of candy from Ernie playing poker. Walter made sure we had the best items to eat at every meal, and the nurses kept on schedule. We also continued to get patient greetings at a prodigious rate, and chuckled and gaffawed our way through junior high and pet stories. Then there was mouth care.

One of Erin's 48-hour chemos is notorious for causing mouth soars, so she's supposed to swish and spit mouth rinse. She immediately rejected the hem-onc rinse, because it "tastes too much like the ocean." Walter ran to the pharmacy and came back with two other options: one minty, the other fruity. Then the drama started up. Tears, flat refusals, pleading for a reprieve. Erin didn't want to practice mouth hygiene for all the bribes I could muster. We stood in the bathroom, like the northbound zax meeting the southbound zax somewhere in the middle of the Prairie of Prax, each refusing to yield.

I described the pain of mouth sores, and the consequences of them getting infected by a dirty mouth. No dice.

I drew targets on the bathroom mirror with markers (some even had dollar values assigned instead of points), and told her she could practice her spitting for fun and profit. No dice.

I offered to gargle twice the amount she had to gargle for twice as long.

Finally, I wore her down (once). I haven't started working on this evening's strategy yet.

The week-long hospital stay has worn out its welcome. Erin can hardly wait to get back to Luke, Uma, Willie, the Molten Lump (aka Teddy, so called because she likes to sit on or near her people and radiate heat until everyone's aglow). We all have frayed ends and have begun exhibiting some snippy behavior. We will take a collective deep breath (our only option in the absence of recreational drugs) and make it through the next nineteen hours. Then we will all heave a sigh of relief and return to the lovefest which is our norm.


  1. Hang in there, Buengers! The way you handle life is an inspiration to us all. I have an idea.....How about a huge group HUG to soothe the frazzled psyches? Wish I was there to share it with you. Love to you all!

  2. It is almost over! I'm so sorry I have not been online in a week or so to know you guys were there! I would have sent a GREAT story about middle school AND a great story about my "pet" possum.

    Glad to hear you are heading home soon!!


  3. Erin, you are an amazing young lady and your rejection of the mouth wash is understandable, one thing you can control. BUT have you thought of writing a poem about the sound of the gargle? Or, how about a song. With the "music" of today I will bet that some group would pick it up and make it a platinum.

    Hugs, B/CS is eagerly waiting for your return.

  4. hello--i don't know you and you don't know me but i follow your blog through one of my friends with childhood cancer and i came across an interesting blip in one of my e-mail may have already seen this but i thought you guys would be interested in the amazing leaps they are making in neuroblastoma research...

    Hereditary gene mutation may spur deadly form of childhood cancer, research suggests.
    The AFP (8/25) reports that an international team of researchers led by investigators at The Children's Hospital of Philadelphia "identified the hereditary gene mutations behind a deadly form of childhood cancer" -- known as neuroblastoma -- a finding that may lead "to genetic tests in high-risk families," according to a study published in Nature. The disease, which "attacks the nervous system," has "puzzled scientists because of its highly variable outcomes: some forms strike infants, but then recede without treatment, while other variants, especially in older children, can be relentlessly aggressive." The researchers were able to "narrow the hunt to one particular chromosome, number 2," after scanning "genomes...within 10 families beset by the disease." Then, following "another round of sequencing," the team discovered "that eight of the ten families had the same telltale variant in one spot, the anaplastic lymphoma kinase (ALK) gene." After investigating whether the mutations "played a role in the so-called sporadic, or non-inherited, forms of the disease," the investigators "found that it occurred in 12 percent of 194 tumor samples taken from a particularly aggressive, high-risk variant."

  5. Erin, How about this as the beginning of your new hit:

    Gargle, gargle, swish and spit
    It sounds like this will be a hit.

    Over the tongue and around the gums,
    Look out sink, here it comes....

    You can take it from here, and think of the appropriate instruments to accompany this. How about toothbrushes on the water glass, flushing the toilet... get creative. Hugs, and I am going to be sure this is anonymous!!!!